Hypothyroidism is ruining my life!!! Where can I buy NDT, as I cannot get this medication in the UK?

[Kimberleyj]

Hi Guys, I was diagnosed with Hypothyroidism 4 years ago, but still suffer with weight gain, fatigue, joint and muscle pain, hair loss etc. I honestly feel that my meds Levothyroxine (100mcgs) does nothing for me, in fact I feel worse when I take it, than when I don't. I desperately want to try NDT as a dear friend of mine in the USA has described how her health has improved dramatically since taking NDT. So, as I am unable to get NDT here in the UK, can anyone tell me how and where I can purchase NDT, how much it costs and what dose I should start on? Any help would be very much appreciated. Thanks, Kim

[SlowDragon Administrator]

First you absolutely need to know as much as possible about what your current levels of thyroid are, also vitamin D, folate, ferritin and B12.

Plus you need to know if you have Hashimoto's also called autoimmune thyroid disease diagnosed by high thyroid antibodies

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.

If 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 important to get tested.

NDT does not suit everyone. Different brands are all different. Just as different Levothyroxine doesn't suit everyone

Article discussing these

thyroidpharmacist.com/artic...

First thing is, do you have any actual blood test results? if not will need to get hold of copies. You are legally entitled to printed copies of your own blood test results

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

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

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up. They can make nominal charge for printing but many will do so for free (£10 max and can not charge at all after May 2018)

How much Levothyroxine are you taking

Can you add most recent results and ranges for TSH, FT3 and FT4, plus have you also had thyroid antibodies tested

Also helpful if had vitamin D, folate, ferritin and B12 tested. Add results and ranges if you have them

[Kimberleyj in reply to SlowDragon]

Hi SlowDragon,

Thank you for all your advice, it's invaluable! You certainly know a lot about the condition. I will have to contact my GP on Monday to ask for my latest results which did include T3 & T4 in my last test after me really insisting, and I have had an antibodies test completed a while ago, so will post all of these results, as soon as I have them. My Vitamin D was tested a long time ago and at the time I was told it was fine.

Thank you again for all your help and advice so far, I look forward to hearing from you again, once I have posted my results.

[Rapunzel]

my meds Levothyroxine (100mcgs) does nothing for me, in fact I feel worse when I take it, than when I don't.

If you haven't tried to take your levo in the prescribed fashion day in day out for months, it's no wonder you don't feel well. If I have misunderstood then apologies in advance.

tpauk.com/main/ will give you some resources for sourcing NDT in the UK if you root around and join but you first need to do all the things SlowDragon has suggested, as whatever you take, the hormones will not work unless and until certain vitamins and mineral deficiencies are addressed first.. Trust me, there is no magic bullet. You could do worse than asking your friend for advice as I would imagine she has gone through a similar process to end up on NDT which isn't the hormone replacement of choice in the US any more than it is here.

There is a lot more information you'd probably find useful on the main Thyroid UK site thyroiduk.org.uk/

Good luck

[Kimberleyj in reply to Rapunzel]

Hi Rapunzel,

Thank you so much for your reply to my post.

I have taken my Levothyroxine for a number of years at the same time and consistently, however, I have still suffered with the same symptoms, albeit not quite as severe.

I will post my results on here as soon as I can get them from my GP.

I just feel that if I can find a way of purchasing NDT, to give it a try, it may just be the medication that could give me back my life!

Thanks again!

[silverfox7]

I know at the moment no one has addressed your question but we find that many asking similar things aren't on the correct dose as doctors don't realise that yes your results are in range but it's where in the range that is important. So it may well be something simple to look at.

[Kimberleyj in reply to silverfox7]

Hi Silverfox7,

Thank you for your reply.

I am aware that GP's just see that your TSH is within the range and even though you still have symptoms, ignore this fact, so won't consider increasing your meds.

However, as I am aware of this, if I feel really strongly that my dose needs increasing and the GP is insistent that I'm on the correct dose, I just self medicate by taking a higher dose on alternate days, slowly increasing this to the higher dose all the time. I do inform my GP of this increase when I next attend an appointment and although they don't approve of me doing this, I explain that I know my own body well enough to know when I need to increase the dosage. Each increase in Levo does help to some degree, but I have never felt completely well and managed to lose weight, or at least stop the weight increasing, stop the joint and muscle pain etc.

The most worrying thing for me is that my 21 year old daughter also suffers with Hypothyroidism and is being failed by our healthcare in the UK, only taking Levothyroxine which isn't improving her health or weight either.

I will advise her to post her results on this site too, to see if anyone can help her.

[sianbarn]

Hi Kimberleyj

Oh I feel your pain... I suffered from awful muscle & joint pain, had 2 knee operations & still suffered. Then I changed my Levo thyroxine from Teva to mercury pharmaceuticals .. within few days I felt better . If you are taking Teva then this is something easy to change , just ask the pharmacist.

Please follow the great advice from the other members of the forum , you’ll start to get better soon.

Wishing you good health & happiness 🤗

[Marz]

NDT does work for some but not everyone - and having the Vitamins and Minerals tested and ensuring they are good will ensure whatever you are taking for your thyroid - will work well - as others have suggested .... hopefully we will hear from you soon

[Dee188]

I have had this since early 1990s and kept gaining weight despite levothyroxine, last year I had to retire from nursing due to chronic pain which is being attributed to fibromyalgia however I have since found out that if your gut is not functioning well (eg IBS) you cannot absorb medications or vitamins properly so on further research I decided to start a good quality high strength probiotic been on it 6 months now and weight decreasing and I seem to be getting better.

[SlowDragon Administrator in reply to Dee188]

Many Doctors seem totally unaware how badly affected gut can be by being hypothyroid

Always essential to test vitamin D, folate, ferritin and B12, especially if cause of hypothyroidism is due to autoimmune thyroid disease (Hashimoto's)

Strictly gluten free diet helps majority.

Hashimoto's affects the gut and often 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. 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 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...

thyroidpharmacist.com/artic...

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

Yes probiotics often very beneficial

[Chickenlady2009]

First, get your blood test results and post them on this site.

Then the knowledgeable people on this site will direct you to the next course of action.

It may be a number of things causing your symptoms. Eg, low minerals and vitamins, inability to convert to T3 etc.

Hope to see your blood test results on here soon!

[Kimberleyj in reply to Chickenlady2009]

Hi Chickenlady2009,

Thank you for your reply and helpful advice.

The problem is GP's don't want to do lots of tests to get to the bottom of your health problems e.g. vitamin & mineral levels, due to the cost.

I would happily pay to have them done if it would help, I just don't know where to start, e.g. what to have done and where to go.

Thanks again!

[SlowDragon Administrator in reply to Kimberleyj]

As per my first reply above

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.

If 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 important to get tested.

[Chickenlady2009 in reply to Kimberleyj]

sorry I live in the USA( although originally English) so I cannot recommend anywhere to get this done. Whilst I had no problem getting my doctor to order tests for me ( as I pay out of pocket for the first $5K) they didn't take action on the results. But vitamins and minerals are easily attainable and relatively cheap so I just supplement myself. I really learned a lot by reading EVERY question and the responses on this site- even if i didn;t think the subject didn't apply to me, I was shocked to realize that most of the people here had the same issues as me, and it did apply.

Wonderful people here have already directed you to private testing. Good luck.

[DarcyJ]

thyroiduk.org.uk/tuk/treatm... Here's a link you might check out. Good luck!!

[Kimberleyj]

Thank you to everyone for all your invaluable advice. Your comments regarding gut health is very interesting, I have lots of problems with tummy upsets, acid reflux, reactions to certain foods etc. so it would be useful to know which strong probiotic to take to see if this might help. I am so grateful for all of the replies to my post as they are all so helpful.

I too like Dee188 have been told I have Fibromyalgia, but I am convinced it is all connected to my Hypothyroidism. I was referred to an Endocrinologist 2 years ago, and was prescribed Liothyronine as well as Levothyroxine, which was a battle to get from my then GP, but eventually they agreed to prescribe it to me (even though supposedly each tablet costs £9 per tablet), however as soon as we moved GP's, when we moved house 3 months later, the new practice took me straight off the Liothyronine saying it obviously wasn't helping as I still had all the problems, but again that was really due to the cost. My GP is just happy to leave me on Levothyroxine (it's a cheap drug after all) even though it isn't resolving my problems. I have tried to self medicate by increasing my dosage to see if it helps, but my tremors seem to get worse and it doesn't make me feel any better, so that's obviously not the answer. I've tried asking for further investigations to try and get my health back on track, but they're just not interested and treat me like I'm making it all up and I'm a hypochondriac.

I've even paid to see a private Endo', but when he recommended to my GP that a referral to a local Women's hospital for hormone tests would be advisable, my GP just refused to refer me, so I was back to square one. I'm convinced taking Levothyroxine has caused my BP to now become high and my pulse now runs between 87 - 106 bpm every day. This situation is untenable as it now puts me at a higher risk of a Stroke/heart attack and I'm only in my early 50's. I was a very energetic, bubbly and slim lady, who had a real zest for life, but I now look and feel twenty years older than my age, 5 dress sizes bigger than I have ever been pre-hypo, with thinning hair, no energy, constant aches and pains throughout my body and no libido. It frustrates me that so many people must be going through a similar situation and doctors just leave us to get on with it.

I will post my results as soon as I have them, but in the meantime can anyone please advise which strong probiotic I can try taking to improve the health of my gut?

[Marz in reply to Kimberleyj]

You may wish to look into Sauerkraut - you can make your own ! or buy Organic from a GOOD health Shop ! Lots of recipes on the Internet. Probiotics is a difficult area as there are so many on the market and our guts are unique to us ! Also look at Kefir

healthunlocked.com/search/s...

Almost two hundred posts in the above link about Sauerkraut