Thyroid removed, questioning Levothyroxine - Thyroid UK

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Thyroid removed, questioning Levothyroxine

dandiliontilt profile image
26 Replies

Hi, I’m new to the forum, thank you for sharing it has given me hope in finding my way through with what am starting to believe what might be a problem with my Levothyroxine medication

I had full thyroid removal in June of 20014 and had another return operation in 2015 to remove infected lymph nodes from my neck

I won’t bother to go into the ins and outs of the challenges relating to the healing process for me but I would like to share and ask for any insight to my current situation.

Over the past year, what started of as what I thought was just an ache in my groin, and was passed of as just a lymph node blocked - was advised to massage it - then my over time the ache has spread, my back aches it feels like I have bad sciatica now. I’ve been back to the doctors with the pain, it’s deep in my limbs mainly on the one side. iv had hip xrays, general wear and tear for a woman my age apparently- I’m 64. I’ve been prescribed codiene and naproxen

I walk like a robot, I can hardly describe the shinanaganas I go through to get clothes on in the morning- if I even bother to change.

Could my 150mcg of Levothyroxine be a contributory factor. I’ve tried, massage and acupuncture I’m desperate to find a way forward

I’m not a negative person, I love life and would really appreciate some insight .

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SlowDragon profile image
SlowDragonAdministrator

Welcome to the forum

Yes it could be. You can have poor conversion of levothyroxine into active Ft3 and/or low vitamin levels

First thing is, do you have any actual blood test results? if not will need to get hold of copies.

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

For full Thyroid evaluation you need TSH, FT4 and FT3 tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have low Ft3

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Is this how you do your tests?

Do you always get same brand of levothyroxine

Are you currently taking any vitamin supplements?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Thriva also offer just vitamin testing

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 if go on thyroid uk for code

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

monitormyhealth.org.uk/thyr...

The aim of levothyroxine is to increase dose upwards until Ft4 is in top third of range and Ft3 at least half way through range (regardless of where TSH is) ...important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

dandiliontilt profile image
dandiliontilt in reply toSlowDragon

Ohh my gosh, this is so very helpful to have it set out like this, especially with the links.

No I’m not taking vitamin supplements and not had a blood test for a year.

So I will certainly get on to this process.

Thank you so much

SlowDragon profile image
SlowDragonAdministrator in reply todandiliontilt

Come back with new post once you get results

There’s much you can likely improve

SlowDragon profile image
SlowDragonAdministrator in reply todandiliontilt

Many people find Levothyroxine brands are not interchangeable.

Once you find a brand that suits you, best to make sure to only get that one at each prescription.

Watch out for brand change when dose is increased or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Teva contains mannitol as a filler, which seems to be possible cause of problems. Teva is the only brand that makes 75mcg tablet. So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half

Are you currently taking Teva?

Teva, Aristo and Glenmark are the only lactose free tablets

healthunlocked.com/thyroidu...

Teva poll

healthunlocked.com/thyroidu...

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).

Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after

Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime

verywellhealth.com/best-tim...

No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.

Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away

(Time gap doesn't apply to Vitamin D mouth spray)

If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test

If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal

dandiliontilt profile image
dandiliontilt in reply toSlowDragon

This morning I have signed myself up for my full medical records.

Contacted my doctor for full, as you mention blood tests.

I also contacted my consultant, as he advised that I should always go to him for the bloods. So he is sending me a full blood request form. Which I should receive within a couple of days, I’ll go along to the hospital to have them taken all ready for a consultation on 9th October.

Thank you for your support, I’m inspired by the thought of regaining at least some of my old self. I can’t tell you how helpful you’ve been.

SlowDragon profile image
SlowDragonAdministrator in reply todandiliontilt

Make sure to get blood test as early as possible (ideally before 9)

No levothyroxine for 24 hours before test

Ideally only water before test

dandiliontilt profile image
dandiliontilt in reply toSlowDragon

The dept taking bloods open at 8 so I’ll be there for then.

I’ve just looked and my levothyroxine it by the manufacturer tevo. I have not started them yet and have others I can use first. I’ll try to avoid using them altogether I really don’t want to be feeling any worse.

SlowDragon profile image
SlowDragonAdministrator in reply todandiliontilt

Well Teva is a Marmite brand, some people love it

But you want to test minimum of 6-8 weeks whilst still on same brand

Which brand of levothyroxine are you currently taking?

dandiliontilt profile image
dandiliontilt in reply toSlowDragon

I’m currently taking ‘accord’ and have been for some time.

I’ve found my latest bloods, taken in November.

They read

TSH 0. 6

Free T3 3.9

Adjusted calcium 2.4

If I’m honest I’m understanding any of it.

SlowDragon profile image
SlowDragonAdministrator in reply todandiliontilt

Please can you add the ranges on results (figures in brackets after each result)

And do you have a Ft4 result

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

FT3 looks extremely low ...need ranges to confirm

Looking for Ft3 at least 60% through range

dandiliontilt profile image
dandiliontilt in reply toSlowDragon

Hi - I can’t see any other results in detail. I wonder where I would get them.

No the tests were done in the afternoon.

My telephone appointment is on the 9th October - perhaps I should ask the consultant for previous test results.

Thank you for your support with this.

SlowDragon profile image
SlowDragonAdministrator in reply todandiliontilt

Thousands of members forced to test privately to get full results

healthunlocked.com/search/p...

healthunlocked.com/search/p...

healthunlocked.com/search/p...

Ask GP for vitamin D, folate, ferritin and B12 tests

dandiliontilt profile image
dandiliontilt in reply toSlowDragon

I will feedback when I have any results- thank you.

I am having to result to the codeine and naproxen that I’m prescribed but only use as a very last result as this seems to bring its own problems.

dandiliontilt profile image
dandiliontilt in reply toSlowDragon

I’ve just had a thought. I am having to use naproxen for last for days and today also. Will this be a problem when it comes to my thyroid tests.

I have received the relevant paperwork from the hospital for the blood tests it’s asking for a full blood count and a couple of other things that I can’t read.

I’m hoping to go Tuesday morning.

Lora7again profile image
Lora7again in reply todandiliontilt

I just googled it and this came up.

This medicine may affect certain lab tests. Tell all of your health care providers and lab workers that you take this medicine (naproxen tablets and capsules).

dandiliontilt profile image
dandiliontilt in reply toSlowDragon

Finally I have some blood results from 12th taken as you’ve recommended this is the outcome. Please, please advise.

TSH 0.8 miu/L(0.2 -5.5)

25-hydroxy vit D3 53.0nmol/L

Ferritin 37ug/L (10.0 -300.0

Vit B12. 169ng/L. (180.0 - 1000.0

Folate. 42u5. 3.4ug/L (4.0)

Still in physical pain and exhausted Have you any recommendations as to what I might do next

Thank you, in anticipation.

SlowDragon profile image
SlowDragonAdministrator in reply todandiliontilt

Suggest you also write new post as well so that more members will see it

TSH 0.8 miu/L(0.2 -5.5)

vit D3 53.0nmol/L

Ferritin 37ug/L (10.0 -300.0

Vit B12. 169ng/L. (180.0 - 1000.0)

Folate. 42u5. 3.4ug/L (4.0)

What is your GP doing about seriously deficient B12?

Make an appointment to discuss ASAP

Likely to need B12 injections, but not until had full testing for Pernicious Anaemia

Marz may pop along and comment

Can you check Folate result....should it read 4.2 ?

Vitamin D

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

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...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But with Hashimoto’s, improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/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 via 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

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Calculator for working out dose you may need to bring level to 40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

With your Vit D, are you also taking it's 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...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

Ferritin is on low side

Never supplement iron without doing full iron panel test for anaemia first

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/Websites/...

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.

healthunlocked.com/thyroidu...

Thyroid disease is as much about optimising vitamins as thyroid hormones

SlowDragon profile image
SlowDragonAdministrator in reply todandiliontilt

Just testing TSH is completely inadequate

Will need to test TSH, Ft4 and Ft3 together privately

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 .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

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

cheapest option for just TSH, FT4 and FT3

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

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

monitormyhealth.org.uk/thyr...

Come back with new post once you get results

Low vitamin levels tend to lower TSH

Poor conversion of Ft4 to Ft3 is extremely common when vitamins are low

Low Ft3 leads to low vitamin levels

It’s Chicken and egg.....improving vitamins may help improve conversion of Ft4 to Ft3

dandiliontilt profile image
dandiliontilt in reply toSlowDragon

Thank you so much, and just for clarification the folate is written as 3.4 ug/L (>4.0)

SlowDragon profile image
SlowDragonAdministrator in reply todandiliontilt

So both Folate and B12 are well below range

Contact GP ASAP

Folate and B12 work together

Suggest you post these B12 and folate results on

healthunlocked.com/pasoc

They are Pernicious Anaemia experts

GP should test for PA before starting on B12 injections

Many hypothyroid patients have low B12 and folate....but not PA

But need to test to rule out PA first before starting on any B vitamins

GP should also prescribe folic acid supplements for low folate (shouldn’t start these until 48 hours after first B12 injection)

But once you have B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial. Better than just folic acid

This can help keep all B vitamins in balance and will help maintain B12 levels between injections too

Difference between folate and folic acid

chriskresser.com/folate-vs-...

Many Hashimoto’s patients have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

Low B12 symptoms

b12deficiency.info/signs-an...

SlowDragon profile image
SlowDragonAdministrator in reply todandiliontilt

You will probably need LOADING dose B12 ......that’s several B12 injections close together over several days/weeks

Then, after loading doses, standard treatment is one injection every 2-3 months, some need more frequent injections

SlowDragon profile image
SlowDragonAdministrator in reply todandiliontilt

Strongly recommend you get FULL Thyroid testing 6-8 weeks after adding last vitamin supplement

Starting with vitamin D(plus vitamin K2)

Then add magnesium couple weeks later

Meanwhile increasing iron rich foods in diet.

Possibly look at taking selenium supplement 1-2 x a week

Meanwhile push GP to test urgently for PA, then starting B12 injections, followed by vitamin B complex

Always get same brand of levothyroxine at each prescription. If necessary try different pharmacies to always stick on same brand

Retest thyroid levels 6-8 weeks after adding last vitamin supplement

Remember to stop taking vitamin B complex a week before ALL BLOOD TESTS as biotin can falsely affect test results

cheapest option for just TSH, FT4 and FT3

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

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

monitormyhealth.org.uk/thyr...

dandiliontilt profile image
dandiliontilt in reply toSlowDragon

Please advise, what’s PA ? I need to ask the doctor to test.

Lora7again profile image
Lora7again

I really cannot understand why you have not been properly monitored after having your thyroid removed. The thyroid is the powerhouse of the body and affects so many functions of your body. One of the first signs I had that there was something wrong was my hair falling out and my nails lifting off their beds. I showed this to my doctor and his response was I was going through the menopause I was 47 at the time and I actually did not go through the menopause until I was 55. I was then back and forward to my surgery for over 2 years until a new GP spotted my TSH was 0.002 and I had a goiter and that was only because I asked him after asking Elaine Moore for advice on her site. By that time I looked and felt very ill and if it wasn't for support sites like this one and in the US I would have probably ended up dead. Sorry if I sound negative but I hear stories like yours over and over again and I really do not know why so many people without a thyroid or who have thyroid disease are treated this way.

pennyannie profile image
pennyannie

Hello Dandiliontilt

Can I just add that a fully functioning working thyroid would be supporting you daily basis with approximately 100 T4 + 10 T3 plus trace elements of T1. T2 and calcitonin.

T4 is branded as synthetic Levothyroxine and T3 is branded as synthetic Liothyronine.

T4 is a storage hormone and needs to be converted by your body into T3 which is the active hormone that the body runs on, and is said to be about 4 times more powerful than T4.

Your conversion of T4 into T3 can be compromised if you vitamins and minerals are not maintained at optimal levels and you may need to supplement ferritin, folate, B12 and vitamin D yourself as though they maybe in the NHS range thereby considered acceptable, but not good enough for you to regain optimal health.

Conversion may also be compromised as we age, if suffering other illness, chronic pain, depression, to name but a few, but at least we can start to shore up our core strength which was where I started when I found this amazing forum a few years ago in my late 60's.

The thyroid is a major gland responsible for full body synchronisation, and your boy's engine, and the controller of your mental, physical, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

It is essential that you are dosed and monitored on your T3 and T4 blood test results and not a TSH result as your feedback loop is now broken as you do not have a thyroid gland.

This quick fix, cheaper single blood test, doesn't give full enough information as it is the relationship between your T3 and T4 levels that needs to be monitored with the intention being to find both T3 and T4 balanced with both hormones being in the upper quadrant of their ranges at a level acceptable to the patient that restores well being and good health.

It does seem in primary care that the TSH seems to be the only blood test and so you may need to pay privately to have these crucial blood tests undertaken. There are full details of so much information on the Thyroid uk website, the charity who support this forum and you will learn much by just reading up there, and on other people's posts on this forum.

It's a massive learning curve, but you can turn so much around for yourself if faced against the proverbial brick wall and you'll receive help and support from other forum members who have been through similar situations.

I'm with Graves Disease and following RAI thyroid ablation in 2005 became extremely unwell some 8 years later, and having been referred to as a conundrum by my doctor, found myself on here looking for answers - which I found - and am now so much better, it beggars belief.

dandiliontilt profile image
dandiliontilt

Thank you so very much for your insight- I am in a world of confusion around the subject and learning masses from this forum.

Thank you.

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