Just diagnosed - Help!: Good morning everyone. I... - Thyroid UK

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Just diagnosed - Help!

Satva
Satva

Good morning everyone. I'm so glad to have found this forum. Results from recent blood test shows "borderline underactive thyroid". 50mg levo prescribed & took first pill this morning. My liver, kidneys, B12, iron, cholesterol all ok. Pre-diabetic (46). Symptoms were weight gain & dieting not shifting weight. Tiredness and depression. My main question is will the thyroid ever recover and go back to normal? I starting taking Viridian Thyroid Complex a few weeks ago coz I suspected it was the problem. I also take B12, Vit D3, Zinc, essential amino acids (for protein) & collagen. I'm cutting out wheat/grains coz I always feel better when I do, but then crave them! Any advice or help greatly appreciated. Thanks.

32 Replies
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Pre diabetes score was 46 - not my age!!

SeasideSusie
SeasideSusieAdministrator

Satva

I starting taking Viridian Thyroid Complex a few weeks

It's very likely that supplement will do more harm than good.

Did you test your iodine level before starting it?

Some hypothyroidism is caused by iodine deficiency, although that would be quite rare in the UK. We can get plenty of iodine from our diet in milk, yogurt, cod, haddock, scampi, etc.

The daily requirement for iodine is 150mcg, your supplement contains 200mcg and that is on top of what you get from your diet.

Iodine solution used to be used to treat overactive thyroid before the current radioactive iodine treatment so it can cause hypothyroidism and can make hypothyroidism worse.

Do you have your test results (including reference range) from when you were diagnosed? Always advised here is to start keeping a record of results. We are legally entitled to them here in the UK so always ask the receptionist (not the doctor) for a print out of your results when you know they are back from the lab. Make a note of them, along with the dose of Levo you are on and how you feel. Note any changes in dose of Levo when they occur, why the change was made and how it affects you. This information will be useful in the future if your GP wants to change your dose and you know where you feel best.

I also take B12, Vit D3, Zinc,

Have you tested these? If so what were the results and how much are you taking? We should always test before supplementing so that we know if we need them and what dose. Some vitamins are water soluble so any excess is excreted. Some, however, are fat soluble and can't be excreted so they are stored and this can lead to toxicity if we are taking too high a dose, eg Vit D.

Are you aware that when taking D3 we should also take it's important cofactors - Vit K2-MK7 and magnesium? Are you taking these?

D3 aids absorption of calcium from food and Vit K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems such as hardening of the arteries, kidney stones, etc.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds if taking D3 as tablets/capsules/softgels, no necessity if using an oral spray.

Magnesium helps D3 to work. We need Magnesium so that the body utilises D3, it's required to convert Vit D into it's active form. So it's important we ensure we take magnesium when supplementing with D3.

Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds if taking magnesium as tablets/capsules, no necessity if using topical forms of magnesium.

naturalnews.com/046401_magn...

drjockers.com/best-magnesiu...

afibbers.org/magnesium.html

D3 should be tested twice a year to ensure we stay within the range recommended by the Vit D Council/Vit D Society which is 100-150nmol/L.

Satva
Satva in reply to SeasideSusie

Thanks very much SeasideSusie, that's really helpful. No, didnt test levels before the thyroid supplement, or the other vitamins, I'll stop taking them. The brand of levo is Almus. Thanks for the advice of asking for the lab report. Does the thyroid ever 'recover' and go back to normal or is it meds for life?

FancyPants54
FancyPants54 in reply to Satva

Unless you have a transient issue which some get through pregnancy, once diagnosed you are going to need treatment for life. If you have Hashimoto's thyroiditis (usually called autoimmune thyroid disease in the UK) your immune system is attacking your thyroid and will eventually kill it. On the way, dying bits of the gland release sudden higher amounts of thyroid hormone into the blood, called a thyroid swing and you can appear over medicated for a while, then when the excess is used or excreted with time you go back to being hypo again, just that little bit more because you have less gland left working. So meds are for life. They aren't a drug, they are a hormone. So think of it like a diabetic needs insulin, a menopausal woman needs oestrogen replacement. We are replacing what our bodies need.

Seaside Susie is the forum's vitamin and mineral guru. Take note of what she says and act accordingly. It's such good advice.

Satva
Satva in reply to FancyPants54

Great advice thanks

SeasideSusie
SeasideSusieAdministrator in reply to Satva

Satva

Occasionally hypothyroidism can be temporary, for example post-partum thyroiditis, but it's not a common occurrence.

If the cause of your hypothyroidism is autoimmune (which is diagnosed when thyroid antibodies are raised and this is the most common cause of hypothyroidism) then this is where the immune system attacks and gradually destroys the thyroid. With this type of hypothyroidism then symptoms and test results can fluctuate as and when the thyroid is attacked and sometimes it's beneficial to adjust the dose of Levo, but eventually the thyroid is completely destroyed leading to full blown hypothyroidism.

When hypothyroidism isn't autoimmune then the thyroid isn't working properly for whatever reason and not producing enough thyroid hormone for our needs.

Generally the thyroid doesn't recover and taking thyroid hormone replacement tends to be for life.

I would ask for a printed copy of all your results up to now, post them on here for comment. Let's see what vitamins have been tested and their levels, we can see whether they are optimal or whether any need improving, we can help by suggesting what supplements you may need.

We Hypos need optimal nutrient levels for thyroid hormone to work properly. Ferritin needs to be a certain level for conversion of T4 to T3. T4 (which is what your Levo is) is a storage hormone and this has to convert to T3 which is the active hormone that every cell in our bodies need. So when having thyroid function tests we really need TSH, FT4 and FT3. It's low FT3 that causes symptoms. Unfortunately many GPs only test TSH which is inadequate.

You should be retested 6 weeks after starting Levo and you will very likely need an increase in your dose of Levo, then retesting again 6-8 weeks later. This should be repeated until your levels are where you need them for you to feel well. The aim of a treated Hypo patient, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their reference ranges, if that is where you feel well. Everyone is different so you need to go by how you feel as well as test results, most doctors just look at numbers and dismiss any symptoms the patient may still have if their levels are within range.

Always advised here, when having thyroid tests:

* Blood draw no later than 9am. This is because TSH is highest early morning and lowers throughout the day. If looking for a diagnosis of hypothyroidism, an increase in dose of Levo or to avoid a reduction then we need the highest possible TSH

* Nothing to eat or drink except water before the blood draw. This is because eating can lower TSH and coffee can affect TSH.

* Last dose of Levo 24 hours before the test, take that day's dose after the blood draw. This is because if you take your Levo before the blood draw the test will measure the dose just taken and show a false high. If you leave longer than 24 hours the result will show a false low.

* If you take Biotin or a B Complex containing Biotin (B7), leave this off for 7 days before any blood test. This is because if Biotin is used in the testing procedure it can give false results (most labs use biotin).

These are patient to patient tips which we don't discuss with phlebotomists or doctors.

Also, take your Levo on an empty stomach, one hour before or two hours after food, with a glass of water only, no tea, coffee, milk, etc, and water only for an hour either side, as absorption will be affected. Take any other medication and supplements 2 hours away from Levo, some need 4 hours.

Satva
Satva in reply to SeasideSusie

Hi! SeasideSusie. Which is the best website to get vitamin levels tested. And, is there a recommended diet for underactive? Thanks

SeasideSusie
SeasideSusieAdministrator in reply to Satva

Satva

The cheapest way to test vitamins is as part of a thyroid/vitamin bundle with one of our recommended labs. Most popular here are:

Medichecks ADVANCED THYROID FUNCTION medichecks.com/products/adv...

Check this page for details of any discounts: thyroiduk.org/getting-a-dia...

or

Blue Horizon Thyroid PREMIUM GOLD bluehorizonbloodtests.co.uk...

Check this page for discount code thyroiduk.org/getting-a-dia...

Both tests include the full thyroid and vitamin panel. They are basically the same test with just a few small differences:

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Total B12 which measures bound and unbound (active) B12 but doesn't give a separate result for each. Medichecks does Active B12.

Total B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Total B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

Blue Horizon include magnesium but this is an unreliable test so don't let this sway your decision, it also tests cortisol but that's a random cortisol test and to make any sense of it you'd need to do it fasting before 9am I believe.

Both can be done by fingerprick or venous blood draw at extra cost.

If you wish to do the fingerprick test, here are some tips:

* Be well hydrated, drink plenty of water the day before, and before you do the test.

* Some people take a shower before hand, some run up and down the stairs to get blood flowing. Personally, as I can't run up and down the stairs, I circle my arm round, windmill style.

* Have a bowl full of hot water, dip hand in and out, swish around, hand needs to go red. If blood flow stops, you can always swish round in the hot water again.

* Stand up to do the test. Make sure your arm is straight down when collecting the blood. Either use a small step stool to raise yourself well above the work surface, or put the collection tube on a lowish shelf. One member uses an ironing board so she can get the perfect height.

* Prick finger on the side, not the tip. I find that half way between the nail bed and tip is about right, or maybe slightly nearer the nail bed rather than the tip. I use my ring finger, but middle finger is next best for me.

* Do not squeeze your finger to get the blood out, it can damage the blood and it may not be usable

I've recently done 2 tests. The first one there was very little blood coming out which was unusual for me so I used a second finger and between the two I gradually filled the tube. However, when I checked the prick site for the first finger the actual cut was very small and as I've had some of these lancets fail before I put it down to that. When I did the second test this is what I did

* Prick my finger as usual, at the same time try and make a very slight twist with the lancet (the blade retracts very quickly so you have like a nano second to twist the lancet). I'm not talking 90 degrees or anything, just a very slight twist to make the cut just slightly bigger, it doesn't hurt or cause a blood bath! This made a big difference, 11 generous drops of blood filled the tube in less 2 minutes.

If you supplement with Biotin, or a B complex containing it (B7), leave it off for 7 days before doing any blood tests as it can give false results when biotin is used in the testing procedure, and most labs do use it.

Video showing how to do a fingerprick test:

youtube.com/watch?v=w2JzToZ...

As for diet, a normal, healthy diet (not low fat, not low calorie) but best to avoid soy in any form so check labels for that.

Satva
Satva in reply to SeasideSusie

Hi! SeasideSusie. I got my Lab print out, it's not that comprehensive, maybe coz it was an MOT as well. Serum free T4 level is 12.6 pmol/L [12 - 22].

Serum lipid levels:

Cholesterol level 4.7 mmol/L [3 -8].

HDL cholesterol 1 4 mmol/L [1.16 - 1.68]

Non high density lipoprotein cholesterol level 3.26 mmol/L

Cholesterol/HDL ratio 3.4 mmol/mmol.

They also tested renal function, liver function, serum ferritin level, B12/folate level, full blood count, haemoglobin A1c - IFCC standardised & Serum TSH level.

I dont have any 'scores' for the above but they said they were all fine.

Am going to ask to see more info on the above.

Does it make sense? Im assuming its only the T4 that shows a thyroid problem?

What is TSH level?

Any advice/recommendations..?

Thanks for your help.

👍

SeasideSusie
SeasideSusieAdministrator in reply to Satva

Satva

TSH is Throid Stimulating Hormone. It is produced by the pituitary and is a signal to the thyroid to produce thyroid hormone. It's generally the test that is used to diagnose hypothyroidism.

A typical reference range for TSH is about 0.2-4.2 or similar.

Primary hypothyroidism is diagnosed when TSH goes over 10.

If a patient has typical symptoms of hypothyroidism and TSH is over range but less than 10, if the FT4 level is below range then that can trigger a diagnosis. Or if TSH is over range but below 10 along with raised Thyroid antibodies then that would be autoimmune thyroid disease (Hashimoto's).

Your FT4 is very low in range so it would be interesting to see what your TSH level was to understand why you were diagnosed. Please try and get the results and ranges for Ferritin, B12 and Folate in particular, it's important for us Hypos to have good levels of these.

Satva
Satva in reply to SeasideSusie

Hi! SeasideSusieI've managed to get the rest of my results as follows: (Sorry its long...)

Serum free T4 level 12.6 pmol/L [12.0 - 22.0]

Serum TSH level 5.85 mu/L [0.27 - 4.2]

Above high reference limit

?Thyroid problem-No diagnosed thyroid problem

Is the patient pregnant?-No

Serum ferritin level 73 ug/L [13.0 - 150.0]

Serum vitamin B12 level 416 ng/L [> 179.0]

Serum folate level 5.6 ug/L [3.9 - 20.0]

Haemoglobin A1c level - IFCC standardised 46 mmol/mol

Haemoglobin concentration 139 g/L [120.0 - 160.0]

Total white blood count 8.1 10*9/L [3.6 - 11.0]

Platelet count - observation 247 10*9/L [150.0 - 400.0]

Red blood cell count 4.78 10*12/L [4.0 - 5.2]

Haematocrit 0.436 L/L [0.36 - 0.46]

Mean cell volume 91.2 fL [82.0 - 98.0]

Mean cell haemoglobin level 29.1 pg [27.0 - 33.0]

MCHC 319 g/L [320.0 - 357.0]

Below low reference limit

Red blood cell distribution width 12.5 % [9.9 - 15.5]

Neutrophil count 4.19 10*9/L [1.8 - 7.5]

Lymphocyte count 3.20 10*9/L [1.1 - 3.5]

Monocyte count - observation 0.44 10*9/L [0.2 - 0.8]

Eosinophil count - observation 0.17 10*9/L [0.04 - 0.4]

Basophil count 0.06 10*9/L [0.02 - 0.1]

Liver function tests Contact Number:[NOT KNOWN]

Clinical Details:TATT

Please note Alanine Aminotransferase is not a UKAS accredited test.

Specimen Source: Blood, Venous

Serum albumin level 46 g/L [35.0 - 50.0]

Serum alkaline phosphatase level 89 iu/L [30.0 - 130.0]

Serum alanine aminotransferase level 25 iu/L [10.0 - 33.0]

Serum bilirubin level 4 umol/L [0.0 - 21.0]

Serum total protein level 70 g/L [64.0 - 83.0]

Renal function tests Contact Number:[NOT KNOWN]

Clinical Details:TATT

Please note: The time between venesection and centrifugation of this s

pecimen exceeded 4 hours. This may result in a falsely elevated

potassium. Please interpret with caution.

Specimen Source: Blood, Venous

Serum sodium level 139 mmol/L [133.0 - 146.0]

Serum potassium level 4.4 mmol/L [3.5 - 5.3]

Serum creatinine level 65 umol/L [44.0 - 80.0]

GFR calculated abbreviated MDRD 85 mL/min/1.73m*2

eGFR calculation assumes a standard surface area of 1.73 m*2. In adult

s, a normal calculated GFR is approximately greater than 90

mls/min/1.73m*2

Serum cholesterol level 4.7 mmol/L [3.0 - 8.0]

Serum HDL cholesterol level 1.40 mmol/L [1.16 - 1.68]

Serum non high density lipoprotein cholesterol level 3.26 mmol/L

Serum cholesterol/HDL ratio 3.4

They didn't do any vitamin level testing.

I hope all the above info helps.

Many thanks for all your help, I really appreciate it.

After 5 days of taking 50mg of levo, am getting slight headaches, but think that could be caffeine withdrawal! Also feel a bit 'revered up' - is that increased metabolism, I wonder?! Am sleeping well and needing more sleep at the moment. Been out walking every day and have cut out all wheat, sugar (apart from natural sugar in fruit, vegs). Still on dairy for now but have very little milk, only in 1 or 2 decaf coffees a day. I drink black decaf tea and some Pukka teas.

SeasideSusie
SeasideSusieAdministrator in reply to Satva

Satva

Serum free T4 level 12.6 pmol/L [12.0 - 22.0]

Serum TSH level 5.85 mu/L [0.27 - 4.2]

You were fortunate to get a diagnosis. Even though your TSh is above range, most GPs wait until it reaches 10. However, your FT4 was very low in range so this may have persuaded your GP to prescribe.

Serum ferritin level 73 ug/L [13.0 - 150.0]

This is pretty good. It's recommended that ferritin is half way through range (82 with that range). I would be reasonably happy with that level and I'd do my best to at least maintain it but try and push it nearer to 100. You don't appear to need an iron supplement but eating iron rich foods such as liver, liver pate, black pudding, etc, regularly will maintain your level and maybe even push it a bit higher.

Serum vitamin B12 level 416 ng/L [> 179.0] - ng/L is the same as pg/ml

This is on the lowish side. According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

Serum folate level 5.6 ug/L [3.9 - 20.0]

This is low. Folate is recommended to be at least half way through range, so 12+ with that range. It doesn't come into the deficiency category so you can help raise your level by eating folate rich foods and supplementing with a good quality, bioavailable B Complex containing methylfolate (not folic acid), eg Thorne Basic B or Igennus Super B. This will also help raise your B12 level as it contains methylcobalamin.

B vitamins should be taken no later than lunchtime as they can be stimulating so you don't want your sleep disturbed by taking them later in the day. They should be taken 2 hours away from your thyroid meds.

When taking a B Complex we should leave this off for 7 days before any blood test. This is because it contains Biotin and when Biotin is used in the testing procedure (as most labs do) it can produce false results.

Your full blood count doesn't show anaemia but your MCHC is just slightly under range. It might be worth checking this again in the future. Nothing else stands out from your results.

Satva
Satva in reply to SeasideSusie

Thank you so much for your reply. I will order the B complex . Do you recommend a multi mineral & vitamin supplement as well and if so, which one? And what about Vit D, (not the D3 one which I have stopped taking). My next blood test is in 6 weeks time and I'm hoping the doc will agree to test my T3 level and also vitamin D. Re the iron, I'm not a lover of liver or black-pudding but will increase my red meat intake and try liver pate! Was it you on here that said they had lost 3 stone? If so, how did you do that? I need to lose about 2.5 stone and hoping the thyroxine will help me with this. Thanks again. B. 😊

SeasideSusie
SeasideSusieAdministrator in reply to Satva

SatvaMultivitamins/minerals aren't recommended. They contain too little of anything to help low levels, tend to use the cheapest and least absorbable forms of active ingredients and often contain things we need to test for first and only supplement if found to have low levels, eg calcium, iodine, iron. If it does contain iron then this affects absorption of everything else as iron should be taken 2 hours away from other supplements.

I can't comment on Vit D as you don't have a result for that. Dose of D3 is based on current level and whether it needs increasing to the recommended level.

It wasn't me who lost 3 stone, I don't know who that was.

Satva
Satva in reply to SeasideSusie

Hi! SeasideSusie. I contacted my Doc (via the receptionist) to test, in my next b/test, what you suggested. Receptionist reported basically No! - the Doc said "My type of thyroid doesn't need antibodies testing or T3, due to my T4 and TSH levels, also Vit D doesn't need testing, due to the lab results." I've booked a telephone consultation with her; earliest is Friday 18th Dec! I'm hoping to try and get a scan to see what is going on, my throat doesn't feel right and swallowing can be a bit difficult, it almost feels swollen inside my throat area. Get breathless as well and night sweats, which is new...

Am not sure what "My type of thyroid is..."???

Any advice would be appreciated. Thanks.

SeasideSusie
SeasideSusieAdministrator in reply to Satva

Satva

Well, I'll try hard to be polite, not always easy when we see some of the rubbish spouted by doctors at times.

the Doc said "My type of thyroid doesn't need antibodies testing or T3, due to my T4 and TSH levels, also Vit D doesn't need testing, due to the lab results."

How does your GP know "what type of thyroid" you have got? Autoimmune is the most common cause of hypothyroidism so as there is a good chance of it being that it would be a good idea to test antibodies to find out. If it's not autoimmune then often we don't know what caused it.

Of course we need FT3 testing, this is the most important test and tells us whether we are over or under medicated. It also tells us whether we convert T4 to T3 well enough which is quite important. Unfortunately doctors don't seem to know this.

As for Vit D which lab results are telling your GP that it doesn't need testing, I'm intrigued!

The only advice I can give is to do a private test as mentioned above.

Satva
Satva in reply to SeasideSusie

I'm equally intrigued! They didn't test Vit D so goodness how she arrives at that conclusion! She's very young so maybe doesn't have much experience with thyroid. I will point out the FT3 testing when I speak to her. Its SO annoying that face-to-face consultations are almost impossible now. Its much easier to read body language and response than on a phone! I will look into the vitamin testing again.thanks very much. B.

SlowDragon
SlowDragonAdministrator in reply to Satva

I would save the Ft3 battle for when you get on higher dose of levothyroxine

At moment concentrate of getting vitamin D tested and thyroid antibodies

SlowDragon
SlowDragonAdministrator

Welcome to the forum

Do you have you actual results from before starting on levothyroxine?

Vast majority of primary hypothyroidism is autoimmune thyroid disease also called Hashimoto’s diagnosed by high thyroid antibodies

Do you know if you had thyroid antibodies tested?

Sounds like it’s Hashimoto’s as you have noticed grain intolerance

You really do NOT want to take any thyroid complex supplements

Most contain iodine, and are NOT recommended for anyone with Hashimoto’s

Your levothyroxine will contain enough iodine

Standard starter dose of levothyroxine is 50mcg

Bloods should be retested 6-8 weeks after EACH DOSE INCREASE

Many people find different brands of levothyroxine are not interchangeable

Which brand of levothyroxine have you been started on?

Satva
Satva in reply to SlowDragon

Hi! SlowDragon for your reply. I dont have the test results but I'll try and get them from the surgery. Almus is the brand. I'll stop taking the supplements and concentrate on gluten free & grain free. Doc said blood test in 6 months to monitor/check.

FancyPants54
FancyPants54 in reply to Satva

Well that's wrong, so he's not much help. You are going to have to learn a lot and direct him to what you need not look to him for advice. You need a blood test 6-8 weeks after you start the medication. Just ring up and book your own with the surgery. Book it first thing in the morning and don't eat or drink anything other than water before the test. Take your daily Levothyroxine AFTER the blood test, never before. Use this same time and method every time you have a blood test and keep track of them as has been mentioned above.

You need to phone up now and ask for a printed copy of your last blood test when you were diagnosed to be either put out for you to pick up or if possible emailed to you. You need the test results and the lab reference ranges on it. Provided it's a print out they will be there. Don't accept dictation over the phone by the receptionist. We thyroid patients have to grow some balls and advocate hard for ourselves in the NHS.

Satva
Satva in reply to FancyPants54

Many thanks for your reply. I know nothing about this problem so really appreciate any help. I've had no health problems for years so am a bit shocked. My GP was away so just had a quick phone call from the duty one. It's so hard to get through to the surgery and/or get an appointment due to all the COVID stuff along. A learning process!

SlowDragon
SlowDragonAdministrator in reply to Satva

Almus & Accord & Northstar 50mcg and 100mcg are all same brand

But beware as Northstar 25mcg is TEVA

dropbox.com/s/6h3h0qi4eqwi6...

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

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)

So yes, it’s fine to take at bedtime, or in middle of night

Recommend getting a weekly pill dispenser. Makes it much easier to remember a daily medication

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

Satva
Satva in reply to SlowDragon

Hello SlowDragon, sorry I forgot to reply to your questions.

I've managed to get the rest of my results as follows: (Sorry its long...)

Serum free T4 level 12.6 pmol/L [12.0 - 22.0]

Serum TSH level 5.85 mu/L [0.27 - 4.2]

Above high reference limit

?Thyroid problem-No diagnosed thyroid problem

Is the patient pregnant?-No

Serum ferritin level 73 ug/L [13.0 - 150.0]

Serum vitamin B12 level 416 ng/L [> 179.0]

Serum folate level 5.6 ug/L [3.9 - 20.0]

Haemoglobin A1c level - IFCC standardised 46 mmol/mol

Haemoglobin concentration 139 g/L [120.0 - 160.0]

Total white blood count 8.1 10*9/L [3.6 - 11.0]

Platelet count - observation 247 10*9/L [150.0 - 400.0]

Red blood cell count 4.78 10*12/L [4.0 - 5.2]

Haematocrit 0.436 L/L [0.36 - 0.46]

Mean cell volume 91.2 fL [82.0 - 98.0]

Mean cell haemoglobin level 29.1 pg [27.0 - 33.0]

MCHC 319 g/L [320.0 - 357.0]

Below low reference limit

Red blood cell distribution width 12.5 % [9.9 - 15.5]

Neutrophil count 4.19 10*9/L [1.8 - 7.5]

Lymphocyte count 3.20 10*9/L [1.1 - 3.5]

Monocyte count - observation 0.44 10*9/L [0.2 - 0.8]

Eosinophil count - observation 0.17 10*9/L [0.04 - 0.4]

Basophil count 0.06 10*9/L [0.02 - 0.1]

Liver function tests Contact Number:[NOT KNOWN]

Clinical Details:TATT

Please note Alanine Aminotransferase is not a UKAS accredited test.

Specimen Source: Blood, Venous

Serum albumin level 46 g/L [35.0 - 50.0]

Serum alkaline phosphatase level 89 iu/L [30.0 - 130.0]

Serum alanine aminotransferase level 25 iu/L [10.0 - 33.0]

Serum bilirubin level 4 umol/L [0.0 - 21.0]

Serum total protein level 70 g/L [64.0 - 83.0]

Renal function tests Contact Number:[NOT KNOWN]

Clinical Details:TATT

Please note: The time between venesection and centrifugation of this s

pecimen exceeded 4 hours. This may result in a falsely elevated

potassium. Please interpret with caution.

Specimen Source: Blood, Venous

Serum sodium level 139 mmol/L [133.0 - 146.0]

Serum potassium level 4.4 mmol/L [3.5 - 5.3]

Serum creatinine level 65 umol/L [44.0 - 80.0]

GFR calculated abbreviated MDRD 85 mL/min/1.73m*2

eGFR calculation assumes a standard surface area of 1.73 m*2. In adult

s, a normal calculated GFR is approximately greater than 90

mls/min/1.73m*2

Serum cholesterol level 4.7 mmol/L [3.0 - 8.0]

Serum HDL cholesterol level 1.40 mmol/L [1.16 - 1.68]

Serum non high density lipoprotein cholesterol level 3.26 mmol/L

Serum cholesterol/HDL ratio 3.4

They didn't do any vitamin level testing.

I hope all the above info helps.

Many thanks for your help, I really appreciate it.

After 5 days of taking 50mg of levo, am getting slight headaches, but think that could be caffeine withdrawal! Also feel a bit 'revered up' - is that increased metabolism, I wonder?! Am sleeping well and needing more sleep at the moment. Been out walking every day and have cut out all wheat, sugar (apart from natural sugar in fruit, vegs). Still on dairy for now but have very little milk, only in 1 or 2 decaf coffees a day. I drink black decaf tea and some Pukka teas.

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SlowDragon
SlowDragonAdministrator in reply to Satva

It will take several weeks for each dose of levothyroxine to have full effect

Bloods should be retested 6-8 weeks after each dose increase

Serum ferritin level 73 ug/L [13.0 - 150.0]

Pretty good - aim to keep over 70.

Serum vitamin B12 level 416 ng/L [> 179.0]

Ideally would want to be over 500.

Serum folate level 5.6 ug/L [3.9 - 20.0]

Rather low

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

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 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...

Low B12 symptoms

b12deficiency.info/signs-an...

You need vitamin D tested

NHS postal kit tests

vitamindtest.org.uk

Or here

monitormyhealth.org.uk

Satva
Satva in reply to SlowDragon

Hi! SlowDragon. I contacted my Doc (via the receptionist) to test, in my next b/test, what you suggested. Receptionist reported basically No! - the Doc said "My type of thyroid doesn't need antibodies testing or T3, due to my T4 and TSH levels, also Vit D doesn't need testing, due to the lab results." I've booked a telephone consultation with her; earliest is Friday 18th Dec! I'm hoping to try and get a scan to see what is going on, my throat doesn't feel right and swallowing can be a bit difficult, it almost feels swollen inside my throat area. Get breathless as well and night sweats, which is new...

Any advice would be appreciated. Thanks.

SlowDragon
SlowDragonAdministrator in reply to Satva

Of course you need thyroid antibodies tested, if not been tested yet

Approx 90% of primary hypothyroidism is caused by autoimmune thyroid disease diagnosed by high thyroid antibodies.....high TPO ...or ....high TG thyroid antibodies

If both antibodies are negative, then ultrasound scan can help diagnose “antibody negative” autoimmune thyroid disease

20% of Hashimoto's patients never have raised antibodies

healthunlocked.com/thyroidu...

Paul Robson on atrophied thyroid - especially if no TPO antibodies

paulrobinsonthyroid.com/cou...

And vitamin D always needs testing with hypothyroidism, especially Hashimoto’s

£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/

Or via

vitamindtest.org.uk

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

The thyroid hormone status would play a role in the maintenance of vitamin D sufficiency, and its immunomodulatory role would influence the presence of autoimmune thyroid disease. The positive correlation between free T4 and vitamin D concentrations suggests that adequate levothyroxine replacement in HT would be an essential factor in maintaining vitamin D at sufficient levels

pubmed.ncbi.nlm.nih.gov/286...

Vitamin D deficiency is frequent in Hashimoto's thyroiditis and treatment of patients with this condition with Vitamin D may slow down the course of development of hypothyroidism and also decrease cardiovascular risks in these patients. Vitamin D measurement and replacement may be critical in these patients.

Suggest you get full thyroid private testing including BOTH thyroid antibodies after 6-8 weeks on 50mcg levothyroxine via Medichecks, Blue horizon or Thriva

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

Satva
Satva in reply to SlowDragon

Thanks for your response and information. I will try and persuade her when we speak, otherwise will crack on and do it myself. She's young and maybe doesn't have much experience with thyroid cases and its so hard not being able to have a face-to-face consultation these days :-( . I will do the Vit D test and self administer if levels are low. I had my first b/test at 9am without having had any food or drink, apart from water. My next one is 8.40 so will do the same in January.

Thanks again. B.

It is extremely unlikely that your thyroid will recover which is why you are entitled to a medical exemption certificate for free prescription as you will need thyroid hormone replacement for life. Hopefully your gp told you this. Once you are optimally medicated it is likely your ‘diabetic score’ will improve.

It is really important to take levothyroxine on an empty stomach and not eat or drink anything for a minimum 30 minutes, preferably an hour. You also need at least an hour before caffeine drinks and 4 hours from any calcium or iron supplements. All of these reduce absorption of the levothyroxine.

It takes 6 weeks for levels to stabilise after each increase and for a reduction in symptoms. Never be happy with blood results ‘in range’ most people feel better when TSH is closer to 1. Gp should keep increasing dose until TSH is close to 1 or your symptoms have improved. It often takes between 3-6 months to reach an optimal dose.

There is a lot to read and learn. This forum is a great resource. Please post your next blood tests along with the ranges for further advice. Wishing you well.

Satva
Satva in reply to cjrsquared

Many thanks. I will. I've seen on here that some take levo at bedtime,. Is that ok as long as on an empty stomach?

cjrsquared
cjrsquared in reply to Satva

Yes it is suggested at least 2 hours after food. Some people find taking levothyroxine at night works better, but it keeps me awake with disturbing dreams.

SlowDragon
SlowDragonAdministrator

Bloods should be retested 6-8 weeks after EACH DOSE INCREASE

Likely to need at least 2 further increases, unless extremely petite

guidelines on dose levothyroxine by weight

Even if we frequently don’t start on full replacement dose, most people need to increase levothyroxine dose slowly upwards in 25mcg steps (retesting 6-8 weeks after each increase) until on full replacement dose

NICE guidelines on full replacement dose

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

Also here

cks.nice.org.uk/topics/hypo...

gp-update.co.uk/Latest-Upda...

Traditionally we have tended to start patients on a low dose of levothyroxine and titrate it up over a period of months.

RCT evidence suggests that for the majority of patients this is not necessary and may waste resources.

For patients aged >60y or with ischaemic heart disease, start levothyroxine at 25–50μg daily and titrate up every 3 to 6 weeks as tolerated.

For ALL other patients start at full replacement dose. For most this will equate to 1.6 μg/kg/day (approximately 100μg for a 60kg woman and 125μg for a 75kg man).

If you are starting treatment for subclinical hypothyroidism, this article advises starting at a dose close to the full treatment dose on the basis that it is difficult to assess symptom response unless a therapeutic dose has been trialled.

A small Dutch double-blind cross-over study (ArchIntMed 2010;170:1996) demonstrated that night time rather than morning dosing improved TSH suppression and free T4 measurements, but made no difference to subjective wellbeing. It is reasonable to take levothyroxine at night rather than in the morning, especially for individuals who do not eat late at night.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

bestpractice.bmj.com/topics...

You will need to be prepared to fight/push for correct treatment

Far too frequently, patients are left on inadequate dose levothyroxine

Very important to regularly retest vitamin D, folate, ferritin and B12, especially in early stages and at least annually after that

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