Thyroid UK
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Pain

That’s it I really can’t take this pain anymore. It has brought me to tears to get from my bed to the toilet. It’s in my hips and down my legs. This has been going on for at least six months but gradually getting worse everyday. The pain is so bad in the night that it scares me to move. Is this linked to thyroid or is it something else. I wake every morning hoping that it disappears.

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SlowDragon gave you some good advice in your post/thread of 10 days ago - about additional testing and posting results. When members see your results they may be able to help you with advice. Low B12 - Low T3 - Low VitD - can all be involved in causing pain. Are you taking other medications ? Supplements ?

Gut issues ? Being gluten free can sometimes help with reducing gut inflammation and the ensuing pain in joints. I have horrid hip/back pain and it can be much worse with certain foods. I also have Crohns and Hashimotos - so know a thing or two about guts :-)

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Trendywends, there's no thyroid history in your profile and have read a few of your past posts.

Have you had a recent blood tests, which should be at the earliest and allow a gap of 24 hours between last dose of hormones and the test. Don't eat till afterwards but you can drink water.

Your doctor may tell you you have fibromyalgia and give you pain relief but you may need T3 added to levothyroxine and few prescribe this. You might have to source some yourself to see if it eases your pain.

First ask for a TSH, T3, T4, Free T4, Free T3 and thyroid antibodies.

and

B12, Vit D, iron, ferritin and folate.

The GP or lab may not do the Frees but you can get these privately through one of our labs. They are home pin-prick tests.

The labs are medichecks or blue horizon.

thyroiduk.org.uk/tuk/testin...

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

When you get your results put them on a new post for comments.

When we are optimally dosed we should have no symptoms. Unfortunately few doctors seem to be aware of this fact.

web.archive.org/web/2010103...

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

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Hi. I had excruciating pain in my hips when I was on Levothyroxine. It was agony to get out of bed. The doctor thought I may be developing rheumatism/arthritis. I also had a weird icy feeling in my chest, hard to describe but it felt like ice melting and running down inside my chest. I also used to faint and get migraines. Since I changed to NDT I haven't had any hip pain, icy feeling, fainting and only occasional migraines. Maybe you are sensitive to the fillers in your medication. Perhaps try a different brand and see if that helps.

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Make an urgent appointment to see GP. Insist on vitamin D, folate, ferritin and B12 being tested

Low vitamin D is extremely common with hypothyroid

Essential to know if you have raised Thyroid antibodies. Ask GP to test if not been done

How long since dose was increased to 75mcg? If at least 6-8 weeks it's time for retesting thyroid too

So For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies.

Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's extremely important to get antibodies tested.

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Thankyou for you advice. The pain has been going on long enough so will make an appointment and have my bloods redone too as it has been 9 weeks since increase. I have had antibodies done and it came back at 158 which the doctors says means I have Hashimotos. I’ve only been getting T4, TSH and Ferritin don’t the last few times. If doctor won’t do it I will go private for the rest. My last result was T4 14 ( 11-27) TSH 11.8 (0.3-3.1)

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What dose of Levo are you taking ? Your TSH is far too high ... needs to be 1 or under.

Are you taking any other meds ? - or supplements ??

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My meds have been put up since these results to 75mg. I take lanzoprazole but that’s all.

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Why would you be taking a PPI ? It will be blocking the uptake of vital nutrients especially B12 and affecting levo too. How long have you been taking them ??

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I have been taking them for the last 20 years. Have had camera down several times and had been offered a op to wrap the top of my stomach to help keep it closed but didn’t fancy an op. I get extremely bad heartburn if not on meds and even occasionally on meds.

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I take it first thing in the morning g and Levo last thing at night so not to interfere too much.

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A PPI is designed as a short course and I cannot believe a Doctor would leave you on them for 20 years - that is shocking. Of course they are well rewarded for prescribing them like smarties ignoring the damage they do.

There are so many natural alternatives. Hypos have LOW acid not high - so when acid is low - foods hang around in the stomach longer than they should as good acid levels are needed to break down proteins into smaller molecules for the onward journey into the gut. This hanging around means foods begin to ferment and it is the funneling upwards of the fermentation into the oesophagus that give the feeling of heartburn and indigestion. This would explain why you still have heartburn whilst taking a PPI. There is plenty to read on the internet about these pills that create billions of dollars for Big Pharma - so have a read.

Your digestion should improve once you have optomised your thyroid levels and of course have good levels of B12 - Folate - Ferritin and VitD. So what was your Ferritin level ?

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My level was only 8 and increased to 41 after iron tablets. I am asking for it to be checked again in next blood. I have suffered from heartburn since I was 15. I was told that I would need to stay on it for life so have never questioned it.

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Have you ever read the leaflet that comes with the PPI ? Check out the side effects on-line ..... Read about natural treatments on-line or on this Forum ....

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The problem I have that it is so so painful to ween off that I couldn’t possible think of trying. I did try charcoal tablets before and no luck.

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Have you ever checked out the side effects on-line ? - or read the PIL ? There are other things to try. Are you gluten free ?

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Hello Trendywends

You've been given some really good advice from knowledgeable members. If you can afford to have some of the more important tests done privately; then I would strongly urge you to do so.

As has been said, hypo contributes to low stomach acid; so if you are able to improve that then your low acid issue should improve.

I also very much agree with not making more than one change at once; if you get some improvement, you won't be able to discern exactly which 'change' helped.

If I was you; I would stop taking the PPI and buy yourself some really good quality probiotics. I've had gut issues all my life too but have only recently purchased some myself (I bought Complete Probiotics by Dr Mercola - a very clued up and respected American doctor).

What persuaded me, was that I read that 70% of your immune system is in your digestive tract. Read the reviews for the product on Amazon (American and British) and you will see how well they are rated. One person had a fungal issue with her toes all her life; she tried every drug her doctor could proscribe and bought all the over the counter products and nothing cured it. Some time after she started with Dr Mercola's for issues with her gut and found her fungal problem cleared up never to be seen again.

They cost around £60; so not cheap admittedly but you and your gut are worth it!

You get 180 tablets which is 3 months supply (at 2 per day). Buying cheaper ones will, in my opinion, be a false economy. The best ones have many different strains (and billions of them in each tablet) which are resistant to stomach acid and bile; so they can get to where they can do most good.

This simple product can be taken whilst you do all the other tinkering about and can only do good things for you and your immune system.

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Your antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all primary hypothyroidism in Uk is due to Hashimoto's

Essential to test vitamin D, folate, ferritin and B12.

Always get actual results and ranges. Post results when you have them, members can advise

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps 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

Ideally ask GP for coeliac blood test first

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...

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

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But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Persistent low vitamins with supplements suggests coeliac disease or gluten intolerance

gluten.org/resources/health...

Your ferritin is ongoing issue

Low stomach acid is more likely to be an issue when hypo

Hundreds of posts on here about low stomach acid

Virtually identical symptoms but very different treatment to high stomach acid

thyroidpharmacist.com/artic...

drmyhill.co.uk/wiki/hypochl...

scdlifestyle.com/2012/03/3-...

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

PPI's lower magnesium and B12 especially

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

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

Low magnesium affects vitamin D. Low vitamin D causes bone pain, especially in legs

articles.mercola.com/sites/...

easy-immune-health.com/magn...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

Politely insist on vitamin D, folate and B12 being tested. Or get full private testing

You must get FT3 tested

TSH should be around one and FT4 towards top of range and FT3 at least half way in range

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Reading your other posts I see you are a distance runner 😊 So you will be using up T3 - which you have not had tested. T3 is the ACTIVE thyroid hormone needed in every cell of your body. It could be the reason your TSH is high as the Pituitary responds to the amount of hormone circulating.

Taking a PPI and low T3 is a recipe for disaster - or aches and pains !

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Ferritin levels just checked and came back at 10 she refused to do all the other vitamins test. I am now on day 4 without lansoprazole as taking on your advice. Seeing doctor on Tuesday and although she says my TSH is fine at 2.8 and to rest in 6 months I’m going to ask if a slight increase would help with the pain. I know I’m going to be put on iron tablets but almost want to ask for an infusion instead as have been feeling rough. Just not sure how to talk about increasing Levo and iron infusion without it sounding like I’m demanding as I’m the type of person that always takes my doctors advice.

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I suggest you read the reply above from SlowDragon again - with the link about Private Testing and the tests required.

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Ask for coeliac blood test and full iron panel.

Ideally you need iron infusion to bring levels up rapidly.

healthunlocked.com/thyroidu...

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Wish you people were our doctors. Will post update tomorrow on the outcome of appointment.

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Surprise surprise doctor think my levels are perfectly normal and when I ask s about all other tests was ignored. One pointer is that she is getting two lots of bloods done to test for inflammation in the joints. Given prescription for iron tablets so here’s hoping that at least in three months I might be feeling slightly better. Will now consider private test although my doctor is retiring end of month so a new fresh doctor might be more open to ideas.

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Extremely unlikely to get full testing on NHS

First thing is to get vitamin D tested via vitamindtest.org.ukm£29 postal kit

Only make one change at a time. Waiting at least 10-14 days before adding something else

So first you are stating iron tablets. Make sure to take each with 1000mcg vitamin C at same time to improve absorption.

Get tested on vitamin D. Assuming low (highly likely) then you will need to supplement. Better You vitamin D mouth spray is good as avoids poor gut function

Come back with actual results on new post for advice on dose required. Recommended to add magnesium and vitamin K2 Mk7

Then look at changing to strictly gluten free diet. Ideally do coeliac blood test first. £19 post kit, if GP won't. Or just go strictly gluten free anyway. Though if you test positive for coeliac it can be extremely helpful further down the line, rather than being just labelled gluten intolerant

GP or private testing for B12 and folate.

Once you have improved vitamin levels, increased Levothyroxine dose and gone gluten free diet, gut should improve enough to look at getting off PPI's. You will possibly need to still improve stomach acid with Apple cider vinegar or Betaine HCL or slippery elm

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