Hi all, I am new to this and not posted before, i was diagnosed as hypo 18 years ago after suffering severe symptoms for over a year, i have been on various levels of levo for years and my levels never seem to regulate, my symptoms are all never consistant and my dr is as much at his whits end as am i. he is unable to prescribe ndt on nhs and i am unable to afford to go private. after some research i have ordered thiroyd and awaiting the delivery. My gp has said he will support me taking these and will do al the bloods that i need to keep a check on me taking them. Where do i start? i have followed a fb group for a few years but they are american based predominitly and don't seem to get the lack of availibility through the nhs, if you could give me a guide to what would be optimum levels to aim for on thiroyd and what blood tests i should be requesting? i currently take b12 and magnesium along with my levo, which i have just reduced from 100mg per day to alternating with 75/100mg daily. so sorry for the very long post. any advice would be much appreciated.
Finally taken the courage to switch to Thiroyd ... - Thyroid UK
Finally taken the courage to switch to Thiroyd - but advice needed Please
- Blood tests
- Levothyroxine
- Migraine
- Magnesium
- Vitamin B12
- Fibroids
- Pernicious anaemia
- NDT
- Peripheral neuropathy
First do you have any recent blood test results and ranges you can add so members can advise?
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
(If/when also on T3, or NDT make sure to take last dose 8-12 hours prior to test)
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
thyroiduk.org.uk/tuk/testin...
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
About 90% of all hypothyroidism in Uk is due to Hashimoto's.
Low vitamins are especially common with Hashimoto's. Food intolerances are very common too, especially gluten. So it's important to get TPO and TG thyroid antibodies tested at least once .
Link about thyroid blood tests
thyroiduk.org/tuk/testing/t...
Link about antibodies and Hashimoto's
thyroiduk.org.uk/tuk/about_...
thyroiduk.org.uk/tuk/about_...
Important to know your most recent blood test results BEFORE you start changing to NDT
Vitamins often need supplementing to improve, ideally FIRST
Thank you for your reply I do have a copy of results from October time somewhere and am due another test in a couple of weeks so will get the results from that before I switch. My b12, bit d and folate all came back low so I started b12 vits, and was advised to take magnesium rather then Vit D and folic acid by the fb group I have been following.
OK, So Dec 2018 TSH 0.78 T4 11.30 i dont have the results for vits but i was told these were now normal.
October 2018 TSH 3.56 FREE T4 14 - b12 181, Serium Folate 1.9
Told to start b12, vit d and folic acid, started on B12, and magnesium.
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Is this how you do your tests?
Can you add ranges on FT4, folate and B12 too
No vitamin D or ferritin test results?
Hi sometimes I forget to not take meds before tests, but will remember in future.
Ft4 range 9.00-22.70
Folate range 2.80-19.00
B12 range 211.00 - 911.00
Vit D was 69 in October but I don’t have a range for that.
So your FT4 was too low, should be nearer 16-18. Suggests you were not on high enough dose
Folate and B12 were both low.
B12 was so low GP should have tested for Pernicious Anaemia. Did they? Especially if you have Symptoms of B12 deficiency
b12deficiency.info/signs-an...
Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial. (As well as sublingual B12 )
chriskresser.com/folate-vs-...
B vitamins best taken in the morning after breakfast
Recommended brands on here are Igennus Super B complex. (Often only need one tablet per day, not two). Or Jarrow B-right
If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 5-7 days before any blood tests, as biotin can falsely affect test results
endo.confex.com/endo/2016en...
endocrinenews.endocrine.org...
Vitamin D is a bit too low. Aiming to improve to at least 80nmol and around 100nmol may be better .
Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement 1000iu for 2-3 months and retest. It's trial and error what dose each person needs.
Once you Improve level, very likely you will need on going maintenance dose to keep it there.
Retesting twice yearly via vitamindtest.org.uk
Have you ever had TPO and TG thyroid antibodies tested?
If not they need testing
So does ferritin
Obviously FT3 needs testing too
Suggest you add vitamin B complex. Wait a fortnight, add vitamin D
Then run full Thyroid and vitamin testing privately
Having reduced your Levothyroxine, level of FT4 will drop further
Thank you, well I have to say I feel shocking since reducing meds again. But when I was on 100 mg a day I was having heart palpertations of a night and was gaining weight rapidly. Dr said I was border over active so to reduce. I felt ok for first week or two and now I’ve crashed again! I take seeking health adino b12 which was highly recommended else where but your opinion is valued, If you can suggest better? I don’t believe o have had tpo and tg tested, you know how limited the nhs is. But my dr will run everything I want once I start the ndt so I will go armed with a long list..... I am going to increase back to
100 a day because I literally am struggling daily since reducing to alternate days. And will start the ndt once I have the results of next bloods at the end of March.
I, too, had palpitations but it was not due to being overactive but due to the fillers/binders in the hormone replacement I was given. Ask the chemist to give you another make of T4. Sometimes it is the fillers/binders in some which cause a bad effect.
Also another test is to take one anti-histamine tablet one hour before you take the tablet and if you don't have a reaction, you need to ask for another make of T4.
I don't think T4's are identical as manufacturers can use different fillers/binders.
All tests have to be at the very earliest possible, fasting (you can drink water) and allow a gap of 24 hours between last dose of levo and the test and take afterwards.
The TSH is highest early a.m. and drops throughout the day and may mean the doctor reduces dose unnecessarily. Ask GP to test B12, Vit D, iron, ferritin and folate.
so i received my ndt Thiroyd yesterday, and had my bloods taken at 9am this morning without taking any thyroxine and fasting, i took 1 pill of the ndt this morning at 9.30 and by 12 my throat started becoming sore, worsening as the afternoon as gone on, is this connected or am i finally getting the cold/cough that i have been surrounded with for weeks on end? it seems really to soon for it to be some kind of side effect from the ndt? any advice would be really appreciated.
Taking levo before test can result in an unnecessary reduction in your dose.
Thank you for your reply. I always have an early morning test, sometimes I forget to not take my tablets but I will set a reminder for my next test. I plan on starting ndt as soon as I have had the next bloods done but should I need to stay in levo for any reason I will try a different brand.
If you do switch to NDT, bear in mind that blood tests wont correspond as it contains all of the hormones, whilst levo is T4 only. The major point is to relieve your clinical symptoms and get TSH around 1 or lower and how 'we feel' (hopefully symptoms begin to resolve).
so i received my ndt Thiroyd yesterday, and had my bloods taken at 9am this morning without taking any thyroxine and fasting, i took 1 pill of the ndt this morning at 9.30 and by 12 my throat started becoming sore, worsening as the afternoon as gone on, is this connected or am i finally getting the cold/cough that i have been surrounded with for weeks on end? it seems really to soon for it to be some kind of side effect from the ndt? any advice would be really appreciated.
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