On levothyroxine 125 ug at present with TSH of 0.06 and free T4 of 16, have no hyperthyroid symptoms , GP going to reduce

[Cogsat123]

Gained 4 lbs a few months when GP reduced then. GP hasn't asked how I feel, going on results. Worried that am going to gain weight, feel low etc. when already having problems with lethargy and tiredness, maybe due to Vit B12 result of 160-174 ng and 2 years of itching, worse in last 7 months. Would be grateful for any advice.

[helvella Administrator Thyroid UK]

Is that a standard serum B12 test? (That is almost certainly what it would be if done on the NHS.) The alternative is an Active B12 test which has a much lower reference interval (range).

I suggest you consider going on to the Pernicious Anaemia Society forum here on HealthUnlocked:

healthunlocked.com/pasoc

They have a wealth of experience of B12 issues.

I'd be more concerned about that right now than your exact levothyroxine dose (though that is also, of course, very important).

Do you have any other results?

[Cogsat123 in reply to helvella]

helvella, thanks so much for your reply. Am working in the day and usually fall asleep on the sofa when I relax in the evenings, hence late reply to you. Thank you for the link to the pernicious anaemai site. I do have a few of those symptoms which I have mainly put down to other reasons, i.e. am in my late 60's, had a small right cerebellar stroke 2 years ago and put e.g. some balance issues down to maybe another one and rang 111 at one point but was reassured. My memory is terrible, worsening gradually. I'm guessing it was a standard serum B12 test requested by the dermatogist I saw. I was taking 1000 ug B12 periodically for some months before not as a result of a B12 test but because I was so tired my daughter bought them for me hoping to make me feel less tired.

No-one has mentioned pernicious anaemia to me, the GP just said my B12 was 'slightly low' and was very reluctant to let me have a Vitamin B12 injection to rule out the cause of the itching. He relented after I did some research and informed him of this. I had a one off Vit B12 jab a few days ago and the itching does seem better but a bit too soon to tell.

I have been on Lanzoprazole for 2 years and only by chance when throwing the side effects leaflet in the bin did side effects of low B12 jump out at me, so guessing that could be the cause but would that cause pernicious anaemia? I think my folate levels were normal.

Sorry so long.

[helvella Administrator Thyroid UK in reply to Cogsat123]

No problem - reply whenever you want or can!

No - lansoprazole would not cause you to develop Pernicious Anaemia. But any proton pump inhibitors (of which it is one) can cause B12 deficiency. And that lack of B12 has the same effects however caused.

Just having a look at some of the documentation for lansoprazole - one UK product says:

Daily treatment with any acid-suppressing medications over a prolonged period of time (several years) may lead to malabsorption of cyanocobalamin (vitamin B12) caused by hypo- or achlorhydria. Cyanocobalamin deficiency should be considered in patients with Zollinger-Ellison syndrome and other pathological hypersecretory conditions requiring longterm treatment, individuals with reduced body stores or risk factors for reduced vitamin B12 absorption (such as the elderly) on long-term therapy or if relevant clinical symptoms are observed.

medicines.org.uk/emc/produc...

(Apart from the wrong-headed way they refer to cyanocobalamin rather than cyanocobalamin, this is typical.)

It also mentions rash as a side effect in its own right.

If your B12 was that low despite having taken a B12 supplement, it does raise the question as to whether you already had low B12, possible Pernicious Anaemia, even before taking lansoprazole. The difficulty being that diagnosis of Pernicious Anaemia is not straightforward. To a large extent, needing B12 injections is close to being a definition in itself. And if you need them, a single injection is not appropriate. You need a course of loading injections following by regular additional injections.

Allowing B12 deficiency to continue untreated can result in worsening effects, including permanent neurological damage. This is not something to delay or defer. Post over on the Pernicious Anaemia Society forum as they know more about B12 issues.

Lansoprazole can also cause poor absorption of anything else which requires acid to be digested and absorbed - including iron.

Have you tried any over-the-counter antihistamines to see if they help with the rash?

[SlowDragon Administrator in reply to Cogsat123]

I have been on Lanzoprazole for 2 years and only by chance when throwing the side effects leaflet in the bin did side effects of low B12 jump out at me, so guessing that could be the cause but would that cause pernicious anaemia? I think my folate levels were normal.

Please add these actual results and ranges

Most thyroid patients on levothyroxine and under medicated have LOW stomach acid

Lanzoprazole is PPI used to treat HIGH stomach acid

Low stomach acid has virtually identical symptoms......very different treatment

Low stomach acid can be a common hypothyroid issue

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

articles.mercola.com/sites/...

thyroidpharmacist.com/artic...

stopthethyroidmadness.com/s...

healthygut.com/articles/3-t...

naturalendocrinesolutions.c...

Protect your teeth if using ACV with mother

healthunlocked.com/thyroidu...

Ppi tends to lower vitamin levels even further.....especially B12 and magnesium

pulsetoday.co.uk/clinical/m...

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

PPI and increased risk T2 diabetes

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

Vitamins need to be OPTIMAL

B12 at least over 500

Folate and ferritin at least half way through range

Vitamin D at least around 80nmol and around 100nmol maybe better

What vitamin supplements are you currently taking ?

[Cogsat123 in reply to SlowDragon]

Thanks so much for your help and advice.

Pasting results from test on the 13th of this month below -

The TSH was 0.02, previously it was 0.04 and before that 0.06. That is obviously what they are basing their 'hyperthyroid' diagnosis on but should the T3 be higher if that is the case? I know very little about T3, amazed they even did the test as didn't sound likely from the conversation. I asked for a Vitamin D test but they haven't done.

Says on my online notes, Resul - Abnormal but expected. Make an appointment to see doctor. But what is the point and definitely don't want to see two doctors now. The doctor has twisted what I said when I rang to ask for the tests-has been gaining 1lb a week since levothyroxine reduction - I said I gained 1lb a week for the four weeks it was reduced in the summer, I think June and in the following 6 months said I had gained another 4 - 5 lbs. And advised me that weight gain could be due to calorie intake and lack of exercise! I am careful not to overeat but do treat myself and make sure I exercise 6-7 days a week.

I have got some Vitamin D tablets and B12 supplements.

My symptoms are more hypo than hyper to me, weight gain, very lethargic, feeling cold. If I gain a pound a week when reduced, I will be about 13 stone at the end of this year and I am just 5 ft tall!

Thanks

Serum free triiodothyronine level

Serum free triiodothyronine level 3.8 pmol/L [2.6 - 5.7]

THYROID PEROXIDASE ABS

Serum thyroid peroxidase antibody concentration 0.20 iu/ml [0.0 - 5.9]

Serum TSH level

Serum TSH level < 0.03 mu/L [0.35 - 4.94]

Below low reference limit

Serum free T4 level

Serum free T4 level 19.7 pmol/L [9.0 - 19.0]

Above high reference limit

[SlowDragon Administrator in reply to Cogsat123]

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?

Ft4 is just over top of range

But Ft3 is only 38% through range

Helpful calculator for working out percentage through range

chorobytarczycy.eu/kalkulator

So you have very poor conversion of Ft4 to Ft3

Likely due to low vitamins and low stomach acid

Absolutely ESSENTIAL To TEST vitamin D, folate, ferritin and B12

You need to know how what these levels are

After 2 years on lansoprazole likely to have very low magnesium

Little point testing magnesium.

You could start supplementing magnesium now while you wait to get vitamin D, folate, ferritin and B12 tested

Magnesium supplements need to be minimum of four hours away from levothyroxine

Magnesium supplements best taken afternoon or evening (depending if you take levothyroxine morning or bedtime)

Good magnesium supplements

ReMag - not cheap but doesn’t upset gut

Calm vitality magnesium powder is cheap and easy to use. Good if you tend to suffer constipation. Best to start on low dose as too much can cause diarrhoea

Come back with new post once you get vitamin results

[Cogsat123 in reply to SlowDragon]

Thanks for very quick response! Yes, test done according guidelines on here.

Re poor conversion of FT4 to FT3, I will see if can get private test of Vitamin D as already asked the practice but not done. Hubby bought me 100 ug Vitamin D3 tablets, just taken maybe 3, should I not take any more until get test done?

They did lots of tests (see long list below) but not sure if folate and ferritin included. My GP said I could have one B12 injection, said not to take the supplement and have a repeat test in 3 months, got one booked for 21st March. Last test was 174 which GP says 'slightly low'. You said should aim for 500 and asked why I couldn't aim for 'optimal' levels but didn't go down well. Next GP spoke to after asking said I could take them but from B12 perspective would be unnecessary. So have to wait until then for repeat test.

I think folate and ferritin were normal on last tests.

I will get some ReMag

Sorry, so long, has taken me some time and my brain feels like cotton wool. Results below.

Bone profile

Serum total protein level 70 g/L [60.0 - 80.0]

Serum albumin level 41 g/L [35.0 - 50.0]

Serum alkaline phosphatase level 89 u/L [20.0 - 150.0]

Serum calcium level 2.29 mmol/L

Calcium adjusted level 2.27 mmol/L [2.2 - 2.6]

Serum inorganic phosphate level 1.16 mmol/L [0.8 - 1.5]

Serum globulin level 29 g/L [20.0 - 35.0]

Serum C reactive protein level

Serum C reactive protein level 2 mg/L [0.0 - 5.0]

Liver function tests

Serum total bilirubin level 12 umol/L [2.0 - 21.0]

Serum alanine aminotransferase level 25 u/L [5.0 - 40.0]

Urea and electrolytes

Serum sodium level 140 mmol/L [133.0 - 146.0]

Serum potassium level 3.7 mmol/L [3.5 - 5.3]

Serum chloride level 106 mmol/L [95.0 - 108.0]

Serum urea level 3.5 mmol/L [2.5 - 7.8]

Serum creatinine level 56 umol/L [50.0 - 98.0]

eGFR using creatinine (CKD-EPI) per 1.73 square metres > 90 mL/Min [60.0 - 120.0]

Full blood count

Haemoglobin concentration 134 g/L [120.0 - 150.0]

Total white blood count 5.1 10*9/L [4.0 - 10.0]

Platelet count - observation 231 10*9/L [150.0 - 410.0]

Red blood cell count 4.1 10*12/L [3.8 - 4.8]

Haematocrit 0.38 L/L [0.36 - 0.46]

Mean cell volume 93 fl [83.0 - 101.0]

Mean cell haemoglobin level 32.6 pg [27.0 - 32.0]

Above high reference limit

Mean cell haemoglobin concentration 351 g/L [315.0 - 345.0]

Above high reference limit

Red blood cell distribution width 11.7 %CV [11.6 - 14.0]

Neutrophil count 2.8 10*9/L [2.0 - 7.0]

Lymphocyte count 1.7 10*9/L [1.0 - 3.0]

Monocyte count - observation 0.5 10*9/L [0.2 - 1.0]

Eosinophil count - observation 0.1 10*9/L [0.02 - 0.5]

Basophil count 0.0 10*9/L [0.0 - 0.1]

Nucleated red blood cell count 0.0 10*9/L [0.0 - 0.09]

[SlowDragon Administrator]

Welcome to the forum

Just testing TSH and Ft4 is completely inadequate

Do you always get same brand of levothyroxine

What vitamin supplements are you currently taking

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 you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

Ask GP to test vitamin levels

If that’s standard serum B12 test result, it’s EXTREMELY low

You need full testing for Pernicious Anaemia before likely starting on B12 injections

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?

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 antibodies and vitamins

medichecks.com/products/adv...

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 down to £26.10 if go on thyroid uk for code

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

monitormyhealth.org.uk/

Also vitamin D available as separate test via MMH

Or alternative Vitamin D NHS postal kit

vitamindtest.org.uk

[Cogsat123 in reply to SlowDragon]

Thank you Slow Dragon. I was diagnosed with hypothyroidism maybe 20 years ago. The dose has varied between 100 ug and 150 ug. My GP will only test for T4 and TSH and only tested for Vit B12 because requested by the dermatologist. But as soon as I have some time I will request some private tests as really want to get to the bottom of this.

Levothyroxine has always been the same brand. I have about 6 weeks of 125 ug before being reduced but hope that before that happens will be able to speak to another doctor at the practice and give some information. Clearly my TSH is low but maybe other reasons for that, I certainly don't feel hyperthyroid. I told my GP of my weight gain when thyroid reduced, tiredness etc. but completely disinterested. I asked if I could be referred to an endocrinologist and the answer but a curt 'no'.Sounds like you have had the same battles with Graves disease.

I think I have left off the levothyroxine before testing for around 24 hours. As soon as I have got to grips with some important business issues, I will get some private testing arranged and get back to you.

Thanks so much

[SlowDragon Administrator in reply to Cogsat123]

Refuse to reduce dose based just on TSH and Ft4

Insist on retesting including vitamin D, folate, ferritin. TSH, Ft4 and Ft3 together

ALL thyroid tests should be done as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Email Thyroid UK for list of recommend thyroid specialist endocrinologists.......NHS and Private

[e-mail]

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 how low TSH is)

EXTREMELY important to have optimal vitamin levels too as this helps reduce symptoms and improve how levothyroxine works

Come back with new post once you get results

[SlowDragon Administrator in reply to Cogsat123]

B12 Last test was 174 which GP says 'slightly low'.

You said should aim for 500 and asked why I couldn't aim for 'optimal' levels but didn't go down well.

Next GP spoke to after asking said I could take them but from B12 perspective would be unnecessary. So have to wait until then for repeat test.

I think folate and ferritin were normal on last tests.

GP is outrageous to say

B12 is only slightly low

Personally I would

A) see yet another GP

Tick all symptoms on the list here that apply

Low B12 symptoms

b12deficiency.info/signs-an...

Or

B) start self supplementing

Low B12 can cause irreversible neurological damage

B vitamins are water soluble so you pee out excess

Starting with supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be beneficial.

This can help keep all B vitamins in balance and will help improve B12 levels too

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 is another option that contain folate, but is large capsule

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

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

endocrinenews.endocrine.org...

With such an extremely low B12 result taking a B12 supplement as well as a B Complex (to balance all the B vitamins) initially for first 2-4 months, then once your serum B12 is over 500 (or Active B12 level has reached 70), stop the B12 and just carry on with the B Complex.

B12 sublingual lozenges

cytoplan.co.uk/shop-by-prod...

amazon.co.uk/Jarrow-Methylc...

healthline.com/nutrition/me...

Vitamin D it’s important to test twice year

Vitamin D - test is £29 here NHS

Very easy - just four drops of blood

NHS postal kit

vitamindtest.org.uk

Comes back with new post once you get result

Aiming to supplement to maintain At at least around 80nmol and around 100nmol maybe better

If under 25nmol this is DEFICIENT and contact/see GP for loading dose prescription

NHS Guidelines on dose vitamin D required

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

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

Some 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...

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

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

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

[SlowDragon Administrator in reply to Cogsat123]

The B12 result

What’s the bottom of range figure

Is it 210 or 180? (Varies with different labs)

What’s folate result and ranges?

B12 and folate work together

[Cogsat123 in reply to SlowDragon]

Thanks again. I can't access my results after 60 days but think the bottom of range figure was 150, first result was 160, then retested insufficient sample but didn't request another test... so I asked for another one, that was 174 - slightly low... think only get one injection because my husband said to the receptionist to see if she could stop mucking about with my health! Probably didn't help although got the jab but now my name is mud Have a Innopure B12 1000 ug supplement I have been taking

[SlowDragon Administrator in reply to Cogsat123]

If supplementing B12 we need to also supplement a good quality vitamin B complex

But remember to stop taking this a week before all blood tests as biotin can falsely affect test results

Another member recommended this B12 last week

healthunlocked.com/thyroidu...

TSH is low because vitamin levels are terrible

We can’t use thyroid hormones unless all four vitamins are at good levels

Vitamin D at least around 80nmol and around 100nmol maybe better

B12 at least over 500

Folate and ferritin at least half way through range

GP’s are mostly completely unaware of the interconnection between hypothyroidism and low stomach acid causing low nutrient levels or why we need good vitamin levels

Getting FULL thyroid and and vitamin testing via Medichecks or Blue horizon 6-8 weeks after any dose or brand change in levothyroxine

Make sure to do ALL thyroid testing as early as possible in morning before eating or drinking anything other than water and last dose levothyroxine 24 hours before test

Only do private test early Monday or Tuesday morning and post back via tracked 24 hour postal service

You can order a kit ahead of when you need it, if it’s on offer at good price

[Cogsat123 in reply to SlowDragon]

Thanks for getting back to me. Been checking my results. Doesn't look like ferritin or folate done but a full blood count and everything is within normal range. I have never been told I have Hashimotos. Presumably I don't if the antibodies are within normal range?

THYROID PEROXIDASE ABS

Serum thyroid peroxidase antibody concentration 0.20 iu/ml [0.0 - 5.9]

Why would my TSH be dropping?

I was thinking of waiting until the thyroxine is reduced, if I don't feel any better or start gaining weight again, see an endocrinologist privately.

Maybe I would just feel better with better medication but I can imagine if I asked in the local pharmacy (Kamsons) where I pick up my prescriptions that I will be advised to consult my GP

[SlowDragon Administrator in reply to Cogsat123]

There are two sorts of antibodies to confirm hashimoto’s

NHS won’t test TG antibodies (thyroglobulin) when TPO antibodies are negative

So you would need to test privately

20% of Hashimoto’s patients never have high thyroid antibodies

Ultrasound scan of thyroid can be helpful

Your TSH is likely dropping because vitamins are terrible

[SlowDragon Administrator in reply to Cogsat123]

Post re Ultrasound scan confirmed Hashimoto’s despite negative antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

[SlowDragon Administrator in reply to Cogsat123]

Presumably you have Hashimoto’s?

Autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

About 90% of primary hypothyroidism is autoimmune thyroid disease

There’s 2 main variations of autoimmune thyroid disease

Hashimoto’s is technically only when there’s a goitre as well

Many of us have Ord’s thyroiditis where thyroid shrinks and shrivels up under autoimmune attack

Generally the term Hashimoto’s refers to both types

With all autoimmune thyroid disease we frequently become gluten intolerant due to leaky gut

Gluten intolerance can cause brain fog and memory issues

Going absolutely strictly gluten free can, very slowly improve brain function

Hashimoto's frequently affects the gut and leads to low stomach acid and then low vitamin levels.....obviously that’s extremely true in your case

Not helped by lansoprazole

Low vitamin levels affect Thyroid hormone working

Poor gut function with Hashimoto’s can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

healthcheckshop.co.uk/store...?

Assuming coeliac test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

drknews.com/changing-your-d...

restartmed.com/hashimotos-g...

Non Coeliac Gluten sensitivity (NCGS) and autoimmune disease

ncbi.nlm.nih.gov/pubmed/296...

The predominance of Hashimoto thyroiditis represents an interesting finding, since it has been indirectly confirmed by an Italian study, showing that autoimmune thyroid disease is a risk factor for the evolution towards NCGS in a group of patients with minimal duodenal inflammation. On these bases, an autoimmune stigma in NCGS is strongly supported

ncbi.nlm.nih.gov/pubmed/300...

The obtained results suggest that the gluten-free diet may bring clinical benefits to women with autoimmune thyroid disease

nuclmed.gr/wp/wp-content/up...

In summary, whereas it is not yet clear whether a gluten free diet can prevent autoimmune diseases, it is worth mentioning that HT patients with or without CD benefit from a diet low in gluten as far as the progression and the potential disease complications are concerned

restartmed.com/hashimotos-g...

Despite the fact that 5-10% of patients have Celiac disease, in my experience and in the experience of many other physicians, at least 80% + of patients with Hashimoto's who go gluten-free notice a reduction in their symptoms almost immediately.

You do not need any obvious gut symptoms to be gluten intolerant

You might be astonished.....I certainly was. More on my profile

You will see hundreds of Hashimoto’s patients on here who have been amazed at the improvements they get on strictly gluten free diet

[pennyannie]

Hello Lorr and welcome to the forum :

Can I just add you if you are diagnosed with hypothyroidism and taking T4 - Levothyroxine, you can't go " hyper ' but you can be over medicated, BUT without a thyroid blood test to include a TSH, T3 and T4 all taken at the same time a TSH result alone isn't sufficient evidence of over medication.

T4 needs to be converted by your body into T3 the active hormone that the body runs on and if your ferritin, folate, B12 and vitamin D are not maintained at optimal levels your body's ability to convert this storage hormone into T3 the active hormone can be compromised.

It your doctor is unable to help you I think it would make sense to organise a private blood test to include all the above thyroid and core strength vitamins and minerals and repost the results and ranges back on here for considered opinion and an explanation of what's going on.

There are full details of where you obtain private blood tests on the Thyroid uk website who are the charity who support this amazing forum and this is where i started off a few years ago when I was dosed and monitored on just a TSH blood test result in primary care and became increasing unwell.

I have read that certain brands of T4 can cause itchiness in some people.

Can you give us any further information ?

I'm with Graves Disease and following RAI ablation in 2005 now manage lingering Graves, thyroid eye disease and hypothyroidism.

[Cogsat123 in reply to pennyannie]

Thank you for your reply and to others who kindly have taken the time. Need to get to work on my small business to keep it going. Will reply tonight.

[Cogsat123 in reply to pennyannie]

Thank you so much pennyannie for taking the time to reply. I think I have confused posts! I will definitely be getting private blood tests and reading the advice on Thyroid UK site. There is no point in asking my GP. The brand of Levothyroxine I take is Teva. When I have a bit more information, I will talk to another of the GP's at the practice.

Thanks

[SlowDragon Administrator in reply to Cogsat123]

Teva brand upsets many many people

Have you only ever had Teva?

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

Teva, Aristo and Glenmark are the only lactose free tablets

Most easily available (and often most easily tolerated) are Mercury Pharma or Accord

Note Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but beware 25mcg Northstar is Teva

List of different brands available in U.K.

thyroiduk.org/medications-f...

Teva poll

healthunlocked.com/thyroidu...

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.

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

Low vitamins tend to lower TSH

Low vitamins result in poor conversion of Ft4 to Ft3

Low Ft3 results in low vitamin levels

Low vitamins lower TSH further

Vicious circle

[Cogsat123 in reply to SlowDragon]

Yes, just levothyroxine but dreading asking for branded products as will be another black mark against my name! How do I get round that? Change GP? I was just thinking today, I've forgotten what going to say, is happening too frequently. I can't remember. Is very worrying, the onset of dementia?? or side effects of medication. I take Montelukast to dampen the itching and it helps but the side effects are worrying, although I tell myself most people don't get serious side effects. I feel like I am a complete wreck at the moment.

[helvella Administrator Thyroid UK in reply to Cogsat123]

Many of us get the product we want by discussing with the pharmacy (rather than the GP).

Have a word, say what you would like, and get it written on your records.

Of course, not all pharmacies are helpful. Some might not be able to help. But ask and change pharmacies as required. If practicable.

Thyroid and B12 issues can both affect memory. No need to think about anything else at present, I suggest.

[Cogsat123 in reply to helvella]

Thanks helvella for your advice and info. This group is so amazing, if only most GP's knew as much as you all do! And so patient and kind. So grateful for the advice. I have worked in the NHS for 24 years as nurse but mainly midwife so not really clued up about these issues so big thank you to Slow Dragon too!

[SlowDragon Administrator in reply to Cogsat123]

No need to involve GP at this stage on brand

If you get paper prescription you can take it to various pharmacies until you get brand of levothyroxine you prefer

Generally small independent pharmacies are often more helpful.

If you get electronic prescription, if the current pharmacy isn’t helpful, get it sent to a more helpful one

Different brands are not interchangeable for many patients

So sticking with Mercury Pharma (25mcg, 50mcg and 100mcg tablets)

Or Accord (only 50mcg and 100mcg tablets)

Accord is also Almus and Northstar

Once you have worked out which brand of levothyroxine you prefer, you can get more added to all future prescriptions.

Memory issues are common when not correctly treated and will improve

Low vitamins won’t be helping

Are you still taking Lansprazole?

[Cogsat123]

Thanks so much for your advice and info, going to see if can talk to consultant at the local hospital, who was lovely when admitted for stroke 2 years ago and was happy for me to stay on 125 mcg of levothyroxine. Hope I can as so fed up with GP surgery apart from locums who have been lovely and caring. But having some blood tests done this week but probably not T3 as not routine or Vitamin D as requested but decided will just go for tests and forget the surgery as getting nowhere. Feel terrible but never mind, 2 GP's convinced problem is that I am hyperthyroid and probably a liar too! because have low TSH of 0.06, don't even ask how I feel, feel like giving up actually but hey my B12 is only 'slightly low' at 174, advise no supplements for 3 months and repeat test and why not for extra measure just reduce my thyroxine prescription just to make me feel even worse! Don't know what to do, feel bad about asking for help during Covid from the provably overstretched hospital in South East England.

[SlowDragon Administrator]

Roughly how old are you ....are you nearing menopause?

Common for conversion of levothyroxine into active hormone to get worse the longer we are on levothyroxine

Often if we manage ok on just levothyroxine for years/decades need to get addition of T3 if conversion of levothyroxine gets worse

First step is to get get all four vitamins optimal and on constant unchanging brand and dose of levothyroxine

[Cogsat123 in reply to SlowDragon]

Late 60's. Think been on levothyroxine for around 20 years, maybe less

[SlowDragon Administrator in reply to Cogsat123]

Increasingly common to get low vitamins as we get older ...especially B12

aplaceformom.com/caregiver-...

But obviously taking any PPI will significantly reduce vitamin levels further. Ppi should only be used for short course, but people get left on them for years

[Cogsat123 in reply to SlowDragon]

Yep, off them now but wish I had read the side effects 2 years ago

[SlowDragon Administrator in reply to Cogsat123]

Work on getting all four vitamins back up to optimal levels

[SlowDragon Administrator in reply to Cogsat123]

Low B12 and ppi

webmd.com/heartburn-gerd/ne...

ebmconsult.com/articles/vit...

pharmacytimes.com/publicati...

[Cogsat123 in reply to SlowDragon]

Thanks again. I have a newish bottle of B12 tablets 1000 ug, will check the reviews for those to see if they will tide me over, got Vitamin D 100 ug, will look for folate and ferritin. Maybe... the GP who reviewed my test results will get in touch, she is lovely, if not I will email them to make some things clear and if no response, will see a private endo. Think might need private endo to issue prescription if no positive response from GP practice

[SlowDragon Administrator in reply to Cogsat123]

Important to supplement vitamin B complex as well as just B12

[Cogsat123]

Oh yes, thanks!