Hi I'm new here Hypothyroidism and Blepharitis - Thyroid UK

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Hi I'm new here Hypothyroidism and Blepharitis

Thyb profile image
Thyb
65 Replies

Hi

I have taken levothyroxine for 9 years and always had problems e.g. diarrhoea yellow rash round mouth and generally unwell 'feeling '. I only take 50mcg 2-3 times weekly as can't stand side effects...Anyone else have problems? Recent TSH 4.71 And T4 11.7. I also have high eye pressure and sore eyes. Recently given hylo forte and Monosopt but haven't used Monosopt yet as eye drops have been changed 4 times in past year....I have so many allergies to recipients xx

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Thyb
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greygoose profile image
greygoose

Do you always have the same brand of levo? Which brand is it?

Thyb profile image
Thyb in reply to greygoose

Hi

Thank you for response. Years ago I originally had actavis, then Teva, Eltroxin, Accord....I paid privately for Tirosint which are supposed to be 'natural gel capsules' but after 1st one 25mcg my heart raced like crazy and blood pressure went sky high. Unfortunate because endo said I can't be allergic to levothyroxine but could be allergic to the fillers. After some experimentation including stopping them for 3 week periods then trying a different brand...my conclusion 'actavis'seems to be lesser of the 'evils' but I wouldn't take it daily...The recent script says 'Accord' pharmacy tells me actavis has sold out to Accord but no idea if that's true......

greygoose profile image
greygoose in reply to Thyb

So, I think it's safe to say that you've tried all brands? And, none of them suited you. But, have you never considered that perhaps the symptoms you experienced were not due to the levo, but due to being under-medicated and still hypo? What's the highest dose you've been on? And what was your lowest TSH?

Having said that, I don't think you can actually be allergic to levo, in the true sense of the term, but it is possible that T4 doesn't suit you. We have quite a few people like that, on here, including myself. I only feel well on T3 only. But, you'd have to try it and see for yourself. Would your endo be willing to put you on T3 only? And, give you a high enough dose to make you well - which is actually the most difficult bit?

Thyb profile image
Thyb in reply to greygoose

Lowest TSH is what it is now 4.71 but Doctor always puts 'abnormal but to be expected'?

greygoose profile image
greygoose in reply to Thyb

To be expected because you aren't taking enough levo.

When a doctor says 'normal', he usually just means 'in-range'. Not what is actually normal for you. Which, of course, he can't know - even if he pretends he does. True normal is different for all of us. But, as we are never tested when we are healthy, we cannot know what our 'normal' is.

But, let's put it this way: a euthyroid TSH - i.e. in someone with no sort of thyroid problem - is around 1 and FT4 is around mid-range.

However, it is totally wrong to try comparing hypo people with euthyroid people because they don't have the same needs. Most hypos need their FT4 higher than a euthyroid FT4, much nearer the top of the range - say about 80% through the range.

And, having the FT4 higher, of course, will mean that the TSH is lower in a hypo than a euthyroid TSH. Lots of hypos need their TSH suppressed because that is where it will go when the FT4 is high enough for them.

But, it's not the TSH that makes them sick or healthy. The TSH doesn't make you feel anything, doesn't cause symptoms. It's just a chemical messenger from the pituitary to the thyroid to tell it when to make hormone. If you are taking enough exogenous thyroid hormone, the pituitary will sense that, and stop making TSH. Which is why the TSH is not the most important hormone. Where thyroid is concerned, it's the FT3 the most important level to monitor - yes, you've got it, the one they never test for! - because T3 is the active hormone, needed by every single cell in the body. And, it's T3 that causes symptoms when it is too high or too low. T4 is more or less just a storage hormone.

So, optimal levels of thyroid hormone are a very individual thing, and in an ideal world, you would be allowed to experiment to find where your levels need to be to feel well. And, not where your doctor thinks they ought to be.

Sorry, got a bit carried away there! lol

Thyb profile image
Thyb in reply to greygoose

Very knowledgeable....appreciated thank you. I will now insist for a T3 blood test. I haven't got used to this site yet. Just seen this reply but responded to another in wrong order lol whoops

greygoose profile image
greygoose in reply to Thyb

Oh, it's very difficult to keep things in order on here. Can get very confusing at times, I'm afraid. :)

Thyb profile image
Thyb in reply to greygoose

Where do you get T3 from does GP or Endo prescribe it

greygoose profile image
greygoose in reply to Thyb

I buy my own, when I can, but it's not easy to find, and at the moment, I don't have a supplier.

Thyb profile image
Thyb in reply to greygoose

Are you in UK or elsewhere? My pharmacy ordered my tirosint from Lumgano Switzerland

greygoose profile image
greygoose in reply to Thyb

I live in France. :)

Thyb profile image
Thyb in reply to greygoose

Nice 😊

greygoose profile image
greygoose in reply to greygoose

Well, not really. lol I don't live in the nice part of France.

Thyb profile image
Thyb in reply to greygoose

Hi

I have just received blood results. I would appreciate very much your thoughts please:-

hsCRP 1.69 <5.0 MG/L

FERRITIN 116.0 13-150 UG/L

Magnesium H 1.00 0.66-0.99

CORTISOL 525.0 113-456 NMOL/L

TSH 6.08 0.27-4.20

T4 Total 57.7 66-181

Free T4 11.9 12-22.0

Free T3 4.27 3.1-6.8

Anti-Thyroidperoxidase abs 275 <34

Anti Thyroglobulin Abs 118 < 115

Vit D (25OH) 52 50-175

Vit B12 266 145-300

Serum Folate 17.80 8.83-60.8

Results are from Bluehorizon Medicals

Look forward to replies please x

greygoose profile image
greygoose in reply to Thyb

hsCRP 1.69 <5.0 MG/L

That's a good result. You don't have much in the way of inflammation.

FERRITIN 116.0 13-150 UG/L

That's very good.

Magnesium H 1.00 0.66-0.99

Magnesium blood tests are not reliable, and you could still be deficient even with an over-range result.

CORTISOL 525.0 113-456 NMOL/L

Testing cortisol just once in the day doesn't tell you much. As cortisol is highest early morning, and drops throughout the day, you need to know what happens during the rest of the day. Does it stay high? Or does it drop? That would completely change diagnosis. So, what you need is a 24 hour saliva cortisol test and DHEA. But, you won't get those ont the NHS, I'm afraid. I would have to be private.

TSH 6.08 0.27-4.20

Well, that's obviously too high. You'll need a couple of increases in dose to bring that down.

T4 Total 57.7 66-181

That is very low! But, not likely to be taken into consideration by a GP.

Free T4 11.9 12-22.0

That is also very low, and more relevant. You need an increase in dose right now.

Free T3 4.27 3.1-6.8

Your FT3 isn't so low because the high TSH is driving conversion. But it's still too low for good health.

Anti-Thyroidperoxidase abs 275 <34

You have Hashi's. Did you know that?

Anti Thyroglobulin Abs 118 < 115

Irrelevant because you know you have Hashi's from the TPOab result.

Vit D (25OH) 52 50-175

Much too low. Your doctor should be giving you loading doses.

Vit B12 266 145-300

That looks ok, but it's an odd range. Is it serum or active?

Serum Folate 17.80 8.83-60.8

That could be a lot higher.

Thyb profile image
Thyb in reply to greygoose

Vit B12 in pmol/L.

Deficient <145

Insufficient <145-300

Consider reducing dose >569

Mine is 266....

On Weds 13th May I started taking:- Ingennus Super B Complex High Potency....B vitamins with Vitamin C . B12 has 36,000 %RI If take 2 tablets a day. I only took one as i thought that was a mega high doseage? I also have Vegavero K2 plus D3 SPRAY Which I haven't used yet as was waiting for results. Also I notice the D3 is from lichen and K2 from natto..my invitaD3 25,000 IU Which I'm told to take Monthly i believe is D3 from 'sheeps wool/lanolin'...only realised when box arrived so unsure which is best x

greygoose profile image
greygoose in reply to Thyb

Oh, I see! So, the range is actually 145 to 569, which makes more sense - although rather too conservative, I think. In Japan the range starts at 500, anything lower than that is considered deficient.

So...

I started taking:- Ingennus Super B Complex High Potency....B vitamins with Vitamin C . B12 has 36,000 %RI If take 2 tablets a day. I only took one as i thought that was a mega high doseage?

I think I'm correct in saying that Igennus contains 900 mcg methylcobalamin, when you take two tablets. That is not a high dose. With your result, I would suggest 5000 mcg daily PLUS the Igennus Super B Complex on top. You're not going to raise the levels much with just 450 mcg.

Also I notice the D3 is from lichen and K2 from natto..my invitaD3 25,000 IU Which I'm told to take Monthly i believe is D3 from 'sheeps wool/lanolin'...only realised when box arrived so unsure which is best

Well, they're both good in their way. Some people are allergic to lanolin, so they would prefer the lichen variety. Same with vegans.

But, I wouldn't call 25,000 IU a month a loading dose! That's only about 800 a day - which doctors think is alright, but isn't even a maintenance dose, and unlikely to raise the levels of a sunburnt gnat! Why not take both? You do need that K2 when taking vit D, because taking vit D increases absorption of calcium from food, and the K2 makes sure it gets into the bones and teeth, rather than building up in the soft tissues, causing problems. But, you do also need to take magnesium, because D3 and magnesium work together. :)

Thyb profile image
Thyb in reply to greygoose

My Endo and GP just say I have underactive thyroid...hypothyroid... I thought Hashimoto's Addisons etc was low Cortisol...you can tell I'm a newby with no knowledge with a rubbish GP and Endo. I was diagnosed about 8 years ago...All GP Said was good news don't have to pay for prescriptions...Bad news your hypothyroid so need levothyroxine....no mention of rrepeating blood tests etc !!

greygoose profile image
greygoose in reply to Thyb

Most GPs - and even endos - are rubbish when it comes to thyroid.

Addison's is low cortisol. Hashi's is autoimmune thyroiditis, where the immune system slowly destroys the thyroid, making you hypo. Very rare to find a GP or an endo that knows anything about Hashi's or antibodies.

But, stick with us, and you'll soon know a hell of a lot more about it all than either your GP or your endo! :)

greygoose profile image
greygoose in reply to greygoose

A brief run-down of Hashi's:

OK, so Hashi's is an autoimmune disease, where the immune system attacks and slowly destroys the thyroid. It is diagnosed by testing Thyroid Peroxidase (TPO) antibodies and Thyroglobulin (Tg) antibodies.

Contrary to popular belief, it is not the TPO/Tg antibodies themselves that attack the thyroid:

"When lymphocytes infiltrate the thyroid gland, mistakenly taking it for a foreign bacteria invader, they damage the thyroid gland and release thyroid peroxidase &/or thyroglobulin into the blood stream. These don't belong outside of the thyroid gland so antibodies are developed to mop them up.

The antibodies are a result of the attack on the thyroid gland, the antibodies don't cause the attack."

thyroiduk.org.uk/tuk/about_...

After every immune system attack on the thyroid, the dying cells release their stock of thyroid hormone into the blood stream, causing the levels of the Frees to shoot up - FT4 to around 30 something, FT3 around 11/12 - and the TSH therefore drops to suppressed.

There is no knowing how long these high levels will persist, but eventually, they will drop by themselves as the excess hormone is used up or excreted, and not only will you become hypo again, but slightly more hypo than before, because there is now less thyroid to make hormone.

(NB: A Hashi's 'hyper' swing is not true hyperthyroidism in that your thyroid is over-producing thyroid hormone. It's physically impossible to 'go hyper' if you are basically hypo. The thyroid cannot regenerate itself to the point of over production of hormones - or even normal production. Very few doctors appear to know that.)

Therefore, it's very important that your doctor does not reduce your prescription, because you’re going to need it again! If you start to feel over-medicated at that point - some do, some don't - the best thing is to stop levo for a few days, then, when you feel hypo again, start taking it again. It's very important to know one's body, and how it reacts.

There is no cure for Hashi's - which is probably one of the reasons that doctors ignore it - apart from the fact that they know nothing about it, of course!

However, between the 'hyper' swing, and the descent back into hypothyroidism, there can be a phase - quite a long one, sometimes - of normality, where the person is neither hypo nor 'hyper'. This is where people sometimes start talking of having 'cured' their Hashi's, by whatever means. But, it doesn't last. Eventually, you will go hypo again.

But, there are things the patient can do for him/herself to help them feel a bit better:

a) adopt a 100% gluten-free diet. Hashi's people are often sensitive to gluten, even if they don't have Coeliac disease, so stopping it can make them feel much better. Worth a try. Some say that going gluten-free will reduce antibodies – I’ve never seen conclusive proof of that, but, you should be aware that even if you were to get rid of the antibodies completely, you would still have Hashi's, because the antibodies are not the disease. It is not the TPO/Tg antibodies that do the attacking.

b) take selenium. This is not only reputed to reduce antibodies, but can also help with conversion of T4 to T3 - something that Hashi's people often find difficult.

c) the best way to even out the swings from hypo to 'hyper' (often called Hashi's Flares, but that doesn't really sum up the way it works) is to keep the TSH suppressed. This is difficult because doctors are terrified of a suppressed TSH, for various false reasons, and because they don't understand the workings of Hashi's. But, TSH - Thyroid Stimulating Hormone (a pituitary hormone) - tries to stimulate the thyroid to make more hormone, which also stimulates the immune system to attack. So, the less gland activity there is, the less immune system activity there will be, meaning less attacks, gland destruction slowed down and less swinging from hypo to hyper and back.

Thyb profile image
Thyb in reply to greygoose

The Super B complex plus the VitD k2 spray say must be taken with main meal...Is it ok to take B Complex and VitD etc together while eating dinner? Which is best form of Selenium to buy/take Maestro (I mean that sincerely as you have a wealth of knowledge).....I never put weight on and very very little exercise because I can't wearing heavy LTSO Brace for spine fractures. 3 fractures in less than 3 years...1st Sept 2017, 2nd December 2019, 3rd Feb 2020......Osteoporosis in spine....I eat tuna chicken potatoes carrots peas mainly......çheese n tomato sarnis wholemeal bread....love cod .....went off on one there sos waffling

greygoose profile image
greygoose in reply to Thyb

The Super B complex plus the VitD k2 spray say must be taken with main meal...Is it ok to take B Complex and VitD etc together while eating dinner?

Yes, that's fine.

Which is best form of Selenium to buy/take Maestro (I mean that sincerely as you have a wealth of knowledge)

Well, let's just say I have some knowledge. And, unfortunately, selenium is not part of it. But, if you look through SeasideSusie 's excellent replies about supplements, you'll find the answer there. I can never remember what it's called!

I never put weight on and very very little exercise because I can't

I wouldn't recommend much exercise with that low FT3, anyway. Just a little gentle walking, if you can.

Osteoporosis in spine...

All the more reason to be supplementing with vit D and magnesium.

.I eat tuna chicken potatoes carrots peas mainly......çheese n tomato sarnis wholemeal bread....love cod

Don't over-do the tuna, it could contain mercury. A wider variety of vegetables might be a good idea. And, what about fruit? Doesn't sound like much fat in all that, either. The body does need good fat, like butter and olive oil.

Thyb profile image
Thyb in reply to greygoose

I use benecol or pro active flora as I have high cholesterol between 7-8 usually and extra virgin olive oil. It's John West fridge pot tuna in spring water not the fresh....prob has got mercury ohoh i don't know maybe cut down 1 pot a week instead of 2-3 and many many thanks for your expertise. I am grateful Greygoose

greygoose profile image
greygoose in reply to Thyb

I use benecol or pro active flora as I have high cholesterol between 7-8

Oh, that is really, really not good! Your cholesterol is high because your T3 is low. It has no bearing on what you eat. That type of margerine, supposed to lower cholesterol, is one huge great con. And, not at all good for your health! Do you know the history of margerine? It was invented to feed turkeys, but the turkeys all died. So, they decided to feed it to humans, instead! Is that really what you want to put inside you? It is highly processed, and possibly contains soy oil. You'd be much better off with butter.

Thyb profile image
Thyb in reply to greygoose

Which butter do you suggest?

greygoose profile image
greygoose in reply to Thyb

Butter is butter. But, full-fat, grass-fed, if possible. You don't want anything low-fat.

SeasideSusie profile image
SeasideSusieRemembering in reply to Thyb

Thyb

It's not easy to buy 100% grass fed butter in supermarkets as far as I know (but I live in an area with just a Co-op and Spar), the nearest I have seen that is easily available in supermarkets is Kerrygold. Their cows are out in the field and grass fed for up to 312 days a year. Obviously they need supplemental feed (silage I believe) during the winter.

I currently pay £2 for an 8oz block.

Thyb profile image
Thyb in reply to SeasideSusie

Many thanks for advice. Much appreciated x

SeasideSusie profile image
SeasideSusieRemembering in reply to Thyb

Thyb

Selenium l-selenomethionine and yeast bound selenium have the best absorption, avoid selenite and selenate forms.

Thyb profile image
Thyb in reply to SeasideSusie

Thank you. How much would I Need approx daily

SeasideSusie profile image
SeasideSusieRemembering in reply to Thyb

Some people prefer to test before supplementing with selenium.

200mcg is often recommended, take no more than that, I take 100mcg.

Thyb profile image
Thyb in reply to SeasideSusie

Thank you. I just looked on internet for them. So far I can only find 200mcg...I'll look tomorrow. Thanks for advice

SeasideSusie profile image
SeasideSusieRemembering in reply to Thyb

Thyb

I like this one

cytoplan.co.uk/selenium

It's a yeast bound selenium and it's a very small tablet, and unlike many selenium supplements this one doesn't have an unpleasant odour.

This company frequently has 3 for 2 offers which makes them very reasonably priced.

Thyb profile image
Thyb in reply to greygoose

My GP and Endo won't test T3 I guess it must be an expensive test

greygoose profile image
greygoose in reply to Thyb

Actually, it's the same price as an FT4. But, most of them don't know how to interpret it. And, if it actually came back low, and you asked for T3 to be prescribed, that would be expensive!

helvella profile image
helvellaAdministratorThyroid UK in reply to Thyb

Accord bought the bit of Actavis that makes medicines in Barnstaple.

They are currently, it appears, in the process of rebranding them.

Thyb profile image
Thyb in reply to helvella

Thank you. Can you tell me what 'normal' TSH and T4 should be please. Do you think TSH 4.71...T4 11.5 Is very 'underactive' or?

helvella profile image
helvellaAdministratorThyroid UK in reply to Thyb

No - I can't.

Not that I don't want to. :-) But the ranges for many tests vary from one lab to another.

TSH tends to only vary a little - something like 0.45 to 4.50 is typcialy - but still it does vary.

FT4 can vary considerably. 11.5 could be anything from fairly high in range to below bottom of range.

You simply have to check for the lab that did your tests. They might have a website? Or the ranges might be visible from your patient access login.

TSH of 4.71 is somewhere around top of range. I would not be feeling good there.

Thyb profile image
Thyb in reply to helvella

Lab says 12-22 for serum free T4 and 0.27-4.2 for TSH

Thyb profile image
Thyb in reply to helvella

Would you feel exhausted headache bit dizzy etc at that rangw?

helvella profile image
helvellaAdministratorThyroid UK in reply to Thyb

One of the problems with hypothyroidism is that there is such a wide range of symptoms - and we don't suffer all of them. One that got me was falling asleep at night, waking after a short time, and being unable to get back to sleep at all. Have seen this from several people, but it isn't the most common effect.

And plantar fasciitis. And dry skin, swollen tongue.

I didn't get headaches. But I did get ocular (visual) migraines.

Luckily for me, I was not left to worsen - waiting for TSH to rise to 10.

Thyb profile image
Thyb in reply to helvella

Re sleep....I have had same problem for as long as I can remember. Eventually fall asleep...wake and so it goes on plus IOP high eye pressure (not so much a headache more a dull ache above eyes/forehead). Opthamologist thinks it maybe thyroid eye disease so I have a CT SCAN In 2 weeks to check. You mentioned waiting for TSH to rise to 10?? Surely that's far too high?

helvella profile image
helvellaAdministratorThyroid UK in reply to Thyb

There have been changes.

At one time, there might have been some doctors diagnosing on a one-off TSH test of around 5 or so. But general good practice suggested that this should not be done as there are many reasons for transient slightly high TSH. So repeat the test in a couple fpo months, or whatever.

Somehow, this has been translated into "never diagnose until TSH is greater than 10". Utter nonsense, in my view.

I had several TSH tests and plotted them in Excel to make a nice little graph. Showed that over many months, TSH was just going up, up, up. My GP then diagnosed and prescribed levothyroxine when my TSH was only just over range. Only at that point did they do Free T4 - which was, similarly to yours, at the very bottom of range.

Thyb profile image
Thyb in reply to greygoose

I also have Osteoporosis in Spine...In 2017 T7....December 2019 T5 fracture and Feb this year T11 fracture......I read levothyroxine can cause osteoporosis also arrrrrgh

greygoose profile image
greygoose in reply to Thyb

Where did you read that levo can cause osteoporosis? I really don't think that's true because lots of people take it for years and years with no problem.

We get all sorts of scare stories like that: suppressed TSH causes osteoporosis; taking T3 causes osteoporosis… But, I think the truth is that you're more likely to develop osteoporosis from being hypo, with the low nutrient levels that hypo causes.

Thyb profile image
Thyb in reply to greygoose

What would you say ranges are for thyroid to be working optimally? I'Think TSH should be under 4 and T4 between 12-22

greygoose profile image
greygoose in reply to Thyb

I've answered that above. :) But, you have to face the fact that your thyroid is not working normally, and never again will. And, if you were taking the right dose of levo, it wouldn't be working at all. That's hypothyroidism.

SlowDragon profile image
SlowDragonAdministrator

Being hypothyroid can cause osteoporosis due to low Ft3

Median TSH graph shows average TSH of healthy population is 1-2

healthunlocked.com/thyroidu...

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 and thyroid antibodies.

You may need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

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, best not mentioned to GP or phlebotomist)

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.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin

medichecks.com/products/thy...

Medichecks often have special offers, and currently has 25% off if order before midnight tonight

Thriva Thyroid plus vitamins

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes vitamins

bluehorizonbloodtests.co.uk...

If TPO or TG thyroid antibodies are high this is usually due to Hashimoto’s (commonly known in UK as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto’s. Low vitamin levels are particularly common with Hashimoto’s. Gluten intolerance is often a hidden issue to.

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Standard starter dose of levothyroxine is 50mcg (unless over 65 years old).

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many patients need TSH significantly under one) and most important is that FT4 is in top third of range and FT3 at least half way through range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also note what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Even if we don’t start on full replacement dose, most people need to increase 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.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

You have been so under medicated for so long you may need to increase very slowly and essential to improve vitamins too at same time

Thyb profile image
Thyb in reply to SlowDragon

Very very informative and helpful thank you very much....My body is only accustomed to having a maximum of 200mcg a week....1.6 mcg per kg of body weight would mean taking 110mcg daily??!! I weigh 69kg. I haven't had weight issues until I started thyroxine approx 8-9 years ago. Initially I put a stone on after a few months. But since then weight stable. I take INVITAD3 25,000 iu's Monthly.

SlowDragon profile image
SlowDragonAdministrator in reply to Thyb

Sadly many medics don’t read guidelines

We see thousands and thousands on here left languishing on ridiculously small dose of levothyroxine

Thyb profile image
Thyb in reply to SlowDragon

The Endo told me I must only have small amounts and build up in very small increments, he has no idea

SlowDragon profile image
SlowDragonAdministrator in reply to Thyb

Yes it can be extremely difficult to increase dose high enough if been very hypothyroid for very long time

Increase in 12.5mcg doses upwards rather than standard 25mcg steps up

All four vitamins need to be regularly retested and frequently need supplementing

But always test first

Strictly gluten free diet helps or is essential for many people too

Thyb profile image
Thyb in reply to SlowDragon

I have my tests after 2 cups of tea plus 1 cup of coffee usually so that's not good...my cholesterol 7.1 not good either. Last week I started taking a Multivitamin with Minerals 1st time ever. Asda's own brand in red and grey carton. Vitamin A Vit D Vit E Vit K Vit C Vit B1 Vit B2 Niacin Vit B6 Folic acid Vit B12 Biotin Pantothennic acid Calcium Magnesium Iron Zinc Copper Manganese Selenium Chromium Molybdenum Iodine and Boron....is that enough? It seems they're lacking ferritin

SlowDragon profile image
SlowDragonAdministrator in reply to Thyb

we never ever recommend any multivitamins

Too little of anything you do need

Always cheap and poorly absorbed ingredients

Iron in multivitamins prevents absorption of other vitamins. Never supplement iron unless found to be deficient

Folic acid not recommended

Calcium not recommended

Iodine definitely not recommended for anyone who is hypothyroid

Always test first and only supplement what’s required

Most hypothyroidism is due to autoimmune thyroid disease (hashimoto’s)

Hashimoto’s patients frequently have high copper

You are supplementing vitamin D

Presumably you had low level?

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/...

Or GP should advise on self supplementing if over 50nmol, but under 75nmol

mm.wirral.nhs.uk/document_u...

Deficient is under 25nmol and requires loading dose

Loading dose vitamin D is 300,000iu over 6-8 weeks.thats typically 5000iu per day for 8 weeks or 7000iu per day for 6 weeks. Important to get levels retested at end of prescription

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

But 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

Generally when hypothyroid it may good idea to supplement magnesium. Testing is unreliable

Also vitamin K2 Mk7 supplement helps send calcium to bones

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Magnesium citrate: mild laxative, best for constipation.

Calm vitality magnesium powder is cheap and easy to use. Best to start on low dose and increase slowly as too much can cause diarrhoea

Other magnesium options

Magnesium taurate: best for cardiovascular health.

Magnesium malate: best for fatigue – helps make ATP energy.

Magnesium glycinate: most bioavailable and absorbable form, non-laxative.

Magnesium chloride: for detoxing the cells and tissues, aids kidney function and can boost a sluggish metabolism.

Magnesium carbonate: good for people suffering with indigestion and acid reflux as it contains antacid properties.

Worst forms of magnesium: oxide, sulphate, glutamate and aspartate.

Bone pain

easy-immune-health.com/pain...

naturalnews.com/038286_magn...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

B vitamins Ideally ALWAYS test FIRST ...ask GP to test

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial.

chriskresser.com/folate-vs-...

B vitamins best taken in the morning after breakfast

Igennus Super B complex are nice small tablets. Often only need one tablet per day, not two. Certainly only start with one tablet (Or even half tablet) per day after breakfast. Retesting levels in 6-8 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...

Ferritin is storage form of iron

Never supplement iron unless deficient. Iron is extremely toxic in excess

SlowDragon profile image
SlowDragonAdministrator in reply to Thyb

High cholesterol is linked to being under medicated and hypothyroid

Should improve as dose of levothyroxine is increased

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Thyb profile image
Thyb in reply to SlowDragon

I can't start statins...I took 1 and woke about 2am with terrible pain in my arm and other spasms but cannot remember all. Told my GP following Morning and of course he said not to take them. I only have had the multivitamins for a week but won't be taking any more now. Unfortunately I have been on diazepam for 46 years!!

SlowDragon profile image
SlowDragonAdministrator in reply to Thyb

no one with hypothyroidism should take statins

Gravety profile image
Gravety in reply to SlowDragon

Could you say why?

SlowDragon profile image
SlowDragonAdministrator in reply to Gravety

See reply above

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Gravety profile image
Gravety in reply to SlowDragon

Thank you. Always clear.

SlowDragon profile image
SlowDragonAdministrator in reply to Thyb

Diazepam may affect thyroid

thyroiduk.org/tuk/treatment...

Thyb profile image
Thyb in reply to SlowDragon

Yes I clicked on the link above and it could affect thyroid

Thyb profile image
Thyb in reply to SlowDragon

I have just ordered Thyroid Premium Gold from Blue Horizon Blood Tests so hopefully results will help make right decisions. I will let you know results when I've had tests. So pleased I found this site as I feel Drs/Endo etc cannot be bothered and they won't do tests that cost them money. Last year I paid £150 for 50 Tirosint gel capsules. They're 25mcg but with regret after only taking 2. Well after 1st one I had palpitations which I never usually get and my blood pressure soared....only positive was they didn't give me diarrhoea like levothyroxine does not dizziness and fatigue which levothyroxine does

SlowDragon profile image
SlowDragonAdministrator

Dry gritty eyes is hypothyroid symptom.

Have you tried hypromellose eye drops

Thyb profile image
Thyb

Haven't tried those eye drops only hylo forte and need to commence monosopt for IOP

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