Question about Levothyroxine.

[Danni54]

I am new here though I am on lung cancer + post's! I have been on Levothyroxine 100 mcg for over 2 year's and had a couple of blood test's in the beginning. Do we need to have periodic blood test's? My profile shows the multiple health problems but I do not have anybody to talk to about this. I am feeling quite ill and have awful pain from 2 fractured vertebrae. Any help would be appreciated. Thank you.

[SlowDragon Administrator]

Welcome to the forum

Yes thyroid and vitamin levels should be tested annually

What were your last test results

Do you always get same brand levothyroxine at each prescription

Do you take levothyroxine waking or bedtime. Levothyroxine is an extremely fussy medication, must be taken on its own, no other medications or supplements within 2 hours minimum, always taking levothyroxine on empty stomach and then nothing apart from water for at least an hour after

Always test thyroid levels as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

What vitamin supplements are you currently taking, if any

GP frequently only tests TSH, which is completely inadequate

Many UK members get full thyroid and vitamin testing done privately

[SlowDragon Administrator]

Do you know if cause of your hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

Or did you have radiotherapy for lung cancer (can affect thyroid function )

ahns.info/survivorship_intr...

Bloods should be retested 6-8 weeks after any dose change or brand change in levothyroxine

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

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

Low vitamin levels are extremely common, especially with autoimmune thyroid disease (Hashimoto’s or Ord’s thyroiditis)

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.

In U.K. medics never call it Hashimoto’s, just autoimmune thyroid disease (and they usually ignore the autoimmune aspect)

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water 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

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off down to £26.10 if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/

NHS easy postal kit vitamin D test £29 via

vitamindtest.org.uk

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease). Ord’s is autoimmune without goitre.

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

[Danni54 in reply to SlowDragon]

Thank you for all of the information. I didn't have a clue about any of this. I have said to Seaside Susie that I take Vitamin D and in the first few month's the dose was put up from 50 mcg to 100 mcg because the level was quite low. I haven't been checked for a long time though and have never been given any information or advice. I will write more tomorrow once I have read your information again . Thank you so much. It means a lot having this information but also having somebody to ' speak ' to.

[SeasideSusie Remembering]

Danni54

Once your levels are stable and you feel well, thyroid-wise, then your GP should test your thyroid annually. Obviously if you become symptomatic your GP should test to check your levels, if you have a dose change you should retest 6-8 weeks later.

It's always worth asking the receptionist for a print out of your results and keep a record yourself, this will help you to know what dose gives you optimal levels. If your surgery offers online access to test results then you can register for this and keep a check on your results that way.

When having thyroid tests we always advise :

* Test no later than 9am, this is because TSH is highest early morning and lowers throughout the day. To avoid a reduction in dose or when looking for an increase we need the highest possible TSH.

* Nothing to eat or drink except water before the test, this is be a use certain foods might lower TSH, and coffee and caffeine containing drinks affect TSH.

* Last dose of Levo should be 24 hours before the test, this is because taki g Levo before the test gives a false high FT4, and taking it longer than 24 hours before gives a false low FT4.

* If taking a Biotin supplement or B Complex then leave it off for 3-7 days before the test as it gives false results.

Take your Levo on it's own, on an empty stomach, one hour before or 2 hours after food, with water only and water only for one hour each side. Any other medication and supplements should be taken 2 hours away from Levo, some need 4 hours (iron, calcium, magnesium, Vit D, HRT, oestrogen). This avoids anything affecting absorption of Levo.

The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or lower with FT4 and FT3 in the upper part of their ranges if that is where you feel well.

Nutrient levels (Vit D, B12, Folate and Ferritin) are recommended to be at optimal levels for thyroid hormone to work properly.

[Danni54 in reply to SeasideSusie]

Thank you so much. I didn't have a clue about any of this apart from not eating or drinking anything other than water for an hour after. I didn't know about the testing and all I have been told is that I need to take Levothyroxine 100 mcg every day. I don't have regular testing and have never been given any results but in the 2 or so year's since I started the Levothyroxine, I have only had about 3 blood tests and this was when my dosage was raised from 50 mcg to 100 mcg, always the same make. I don't have a goitre. Our Surgery is not wonderful at giving information but I am waiting for a Gastroscopy and have to speak to my Dr. soon so I will speak to him about the thyroxine and testing. I am feeling very ill just now and am in horrendous pain from 2 fractured vertebrae in my spine which I was told was cancer but then no, it's Osteoporosis but I don't trust our hospital as this happened with the lung cancer and they left me for 15 month's with cancer and no treatment. Long story! I have wondered whether my thyroxine might need tweaking because I feel so ill. I will reread all of the above information again tomorrow. Thank you so much. Must admit that I'm desperate!

[Rosebud1955 in reply to Danni54]

Hi Danni54I’m sorry you’re feeling so desperate! Be strong and get as much info from the knowledgeable people on this site.

Sending you much love and empathy!

[Danni54 in reply to Rosebud1955]

Hi. Thank you so much. I don't have anybody here who understands so I really appreciate the support I find here and on the lung cancer forum. It's been a really bad few day's and my spinal fracture's are causing so much pain despite morphine and Opioid's. I haven't been given any advice or information from medic's here about Thyroid problems but was just told that I needed to take Levothyroxine! No support from anybody here although my Dr. keeps saying that he is really sorry that I'm in such pain and he has now given me Lidocaine patches to put on the lump at the base of my spine where the 2 fracture's are. They are not helping yet! I don't usually moan on like this but I'm in agony and it's getting worse every day!Thank you for the support. I'm here for you as well, if you ever need someone to talk to.

Love and hugs

[SlowDragon Administrator in reply to Danni54]

You say you’re waiting for a Gastroscopy

Presumably because of gut issues

Gut and thyroid frequently go together

When under medicated and/or low vitamin levels we frequently have poor gut function

Get hold of last test results - were these done after dose increase to 100mcg?

Which brand of levothyroxine are you taking?

Teva brand upsets many people

Request GP test folate, ferritin and B12 plus full thyroid testing- TSH, Ft4 and Ft3……plus thyroid antibodies if never been tested

Book test for as early as possible in morning, just have water before testing and last levothyroxine dose 24 hours before test

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight is approx 1.6mcg levothyroxine per kilo per day

[Danni54 in reply to SeasideSusie]

Forgot to say that I am taking Vitamin D!

[SeasideSusie Remembering in reply to Danni54]

You won't be give results, you have to ask for them but never ask the doctor, always as the receptionist.

Are you taking Vit D because you were tested and found to have a low level? Is it prescribed?

We shouldn't take Vit D without first testing to find out what our level is and whether or not it needs improving. The Vit D Society and Grassroots Health both recommend a level of 100-150nmol with a recent blog post on Grassroots Health recommending at least 125nmol. We should also test twice a year when supplementing with Vit D to ensure we stay within the recommended range. Excess Vit D is stored and can lead to toxicity.

Also, when taking D3 there are important cofactors needed, magnesium and Vit K2-mk7. D3 aids the uptake of calcium from food and K2-mk7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissue where it can be deposited and cause problems, magnesium is needed to help the body convert D3 into it's usable form.

[Danni54 in reply to SeasideSusie]

Hi. Thank you for your reply and all of the information. I have not been tested for Vitamin D deficiency but wrote information to SlowDragon. My Dr. told me to take it for Osteoporosis . I have had a terrible day of pain in my spine but also my stomach and the pain is becoming unbearable despite Oramorph and Opioid's. I have never been given information or advice from my Dr. about taking Vitamin D or Levothyroxine and it was my sister who told me to drink plenty of water when I take it. I will write more tomorrow as I'm feeling really awful. Thank you again. You are all amazing. Take care.

[SlowDragon Administrator in reply to Danni54]

How low was vitamin D How much vitamin D are you currently taking

Test twice yearly via NHS private testing service when supplementing

vitamindtest.org.uk

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 CCG 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...

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

amazon.co.uk/BetterYou-Dlux...

It’s trial and error what dose we need,

Vitamin D and thyroid disease

grassrootshealth.net/blog/t...

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...

Great article by Dr Malcolm Kendrick on magnesium

drmalcolmkendrick.org/categ...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

[Danni54 in reply to SlowDragon]

Hi . Thank you so much for all of the information. The Dr. advised me to take Vitamin D because of the 2 fracture's in my vertebrae but he didn't advise what kind to get so I just bought Boots High Strength Vitamin D because my Pelvic bones are thinning but I have never been referred to a Specialist. The bottle has Vitamin D 3, 25 ug and 500% NRV. Does that sound right. I told my Dr. that I was taking High Strength and all he said was " Good. " )! I have Diverticulitis so my diet is pretty awful. My spinal fracture's were diagnosed as cancer and the Dr. rang to tell me and said that he " would be with me till the end " ! 5 day's later, he rang, not cancer or but Osteoporosis. As this is what happened with the lung cancer, I am very sceptical about our hospital's ability to read an Xray! The lung tumour was on an Xray for 15 month's and was ' found ' again when I got pneumonia. They have been short of Radiographer's for quite a long time. I take Levothyroxine Sodium 100 mcg ,Mercury Pharma Group Ltd. and haven't been tested for about a year. Probably before Covid. I knew nothing about what you have told me, have no medical person to talk to except my G.P. who is overwhelmed with keeping people informed about Covid and mostly we have phone appointments . I feel so alone and desperate because the pain is getting worse in my spine but I want to find way's of helping myself because up until your messages, I have not even had a cancer Nurse to speak to or anybody else.

This site is a Godsend though because I have had support from the people and Nurses on the lung cancer forum but nobody here at home so I have pretty much had to deal with everything on my own with occasional input from my G.P.

I will reread the information you have given me and Seaside Susie. Thank you again and I will get back to you tomorrow. Take care.

[SlowDragon Administrator in reply to Danni54]

25ug is ONLY 1000iu

nafwa.org/vitamind.php

How low was vitamin D

Many thyroid patients need 2000iu-4000iu daily as a maintenance dose……and higher dose if need to be increasing levels

Suggest you get vitamin D retested ASAP

vitamindtest.org.uk

Come back with new post once you get results

Aiming for vitamin D at least around 80nmol and around 100nmol maybe better

Magnesium and vitamin K2 mk7 important for good bone health

[SlowDragon Administrator in reply to Danni54]

Mercury Pharma brand is one of most well tolerated brands

They make 25mcg, 50mcg and 100mcg tablets

Approx how much do you weigh in kilo

Guidelines on dose levothyroxine by weight as guide ….many people need higher dose…

You may simply not be on high enough dose levothyroxine

Always test as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Important folate, B12, ferritin and vitamin D tested at least annually

Thousands upon thousands of U.K. patients forced to test privately to make progress

GP frequently only tests TSH and this is totally inadequate

[SlowDragon Administrator in reply to Danni54]

Any vitamin D you swallow as tablets or gel must be minimum 4 hours away from levothyroxine

Mouth spray vitamin D can be an hour away

Vitamin D and Covid

Notice how much vitamin D many of these medics are taking

vitamind4all.org/letter.pdf