300 mcg levo: Hi all, am new on here, in a... - Thyroid UK

Thyroid UK
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300 mcg levo

Hi all, am new on here, in a nutshell I'm on a crazy dose of T4 300mcg..a private and an Nns endo have prescribed T3 as a result of all ither blood work coming bavk normal..( Adrenal, caolliac, autoimmune..except free T3 (1.7l) unfortunately my health authority Grampian won't prescribe.. where is the best place to buy pro tem whilst I engage my MP to fight the cause.. chemist here want £350 for 28 tablets 😱😱

27 Replies
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Winston13

If your NHS endo wont give you a private prescription, can you private endo give you one? This can be sent to Germany where it costs about 30 euros for 100 tablets. The prescription needs to be written:

Liothyronine 20mcg

100 tablets

or 200 if that's what they will prescribe.

thyroiduk.org/tuk/treatment...

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Hi Yes Endo will give me prescription, the link I followed for Germany says no longer ship to UK 🤔🤔

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Have you looked at the Bennewitz website? It says

Note for our customers in the UK:

We need your prescription in the original. Please send to: ........

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Depending on make ( USA imported cytomel will be who knows what price) if you have been quoted the figure of £350 for UK T3 that is not correct. It is currently costing between £236 and £258 for 28 tablets. So still high, but not £350. Pharmacists may make a charge for dispensing a private prescription if they wish although I'd guess most won't, but I think it's capped at £60. So I still wonder where £350 comes from. However, as your private Endo has given you a prescription you have the option - at the moment - to source relatively cheaply from Germany, as SeasideSusie advises, the German make Thybon Henning. This is dispensed as Liothyronine Hydrochloride rather than Liothyronine Sodium which is the active ingredient in UK makes of T3. You can also source that from some UK pharmacists who have made the effort to access it for patients. There is one UK pharmacist that "routinely dispenses Thybon Henning" and although dearer than the German price, is nevertheless, less than a third of the above prices. And they mail the tablets post-free.

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Thank you so much really useful, did you have a German link ?

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My German pharmacy no longer ships to the UK against a UK prescription, but here are other sources thyroiduk.org.uk/tuk/treatm...

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Just wondering if you could give the name of the UK pharmacy that dispenses Thybon Henning- may still be cheaper than trips to Germany- Bennewitz told me they would no longer ship it after Brexit. Thanks very much.

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Yes certainly. I have copied you by pm, the email they sent me.

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If they won't ship it after Brexit to you, I wonder if the UK pharmacy will still be able to get it.

My pharmacist, 6 months ago, said to me (when I mentioned medications and Brexit) that "they (voters) have no idea what they have done." That chilled me then, and still does now.

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Well yes they can at an extortionate price..

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Two other online Geman pharmacies have stopped selling to me already. They haven't said why. A pharmacist friend in Germany says it's premature, as nothing's been decided yet. If we still have a reciprocal health agreement with Germany after Brexit, we may still be able to use our precriptions in Gemany.

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Typical Germans, first sign of trouble.. bail out 😁😁

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I appreciate the smilies. However, if you were a German pharmacy you would not wish to have any backlog of prescriptions when headed for an uncertain future. Any checks they apply might cease to be possible after 29 March 2019. And any UK prescriptions might immediately cease to be valid.

Without knowing the details of German law and practices it is impossible to know why they feel the need to withdraw quite this early.

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One pharmacy owner makes a decision for who knows what reason, and instantly the whole nation is condemned? If he was reading here, he'd probably feel entirely validated.

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I don't want to get into a political debate, but don't believe all the scare stories you hear about Brexit.

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FancyPants54 I doubt that a pharmacist is any better placed to be a political pundit than the next person. Why would a commercial venture such as a pharmaceutical company, or more likely, an international importer, wish to close off a potentially lucrative market simply to indulge in feeling miffed that the UK has (or hasn't) followed a particular course of action?

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He was talking about supply issues. About how all this is going to (and already is in some cases) affecting drug supply.

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The current supply difficulties are being caused by the need for NHS and importers to stockpile. Production can't just be ramped up because the UK has behaved like an idiot. Production is what production is. So at the moment supplies are being diverted into stock for next spring. Later on the problem will come when the import system hits the rocks.

All the medications we import have a code on them. It's one of those squares with wiggly lines on, I can't remember the name of it right now. We won't be part of that international coding system and medications won't be able to be sold here with that on the box because there will be no end view of how the medications are being stored or used. So we have to remove them (i.e. repackage) and come up with our own replacement system. So far we don't have that in place. Basically once 29th March passes we won't be able to dispense medicine that has the wrong code on it.

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If your NHS endocrinologist says you have clinical need you should be prescribed

See very recent debate in Scottish parliament about this

Transcript here

theyworkforyou.com/sp/?id=2...

And video link

healthunlocked.com/thyroidu...

See list of patients in Health areas at end of this

gov.scot/binaries/content/d...

1 like
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Thank you, makes for interesting reading, given I'm on a dose way over any recommendation, and all other tests have already been performed and shown negative..

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So have you had TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12

Can you add most recent results and ranges

Low vitamin levels are extremely common, especially if Thyroid antibodies are raised

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take 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)

Low stomach acid or malabsorption issues are extremely common, as is gluten intolerance

You do not need ANY GUT SYMPTOMS to still have significant gluten issues

Lactose intolerance is also very common

Do you always have same brand of Levothyroxine?

Many people find Levothyroxine brands are not interchangeable.

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.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

Always take Levo on its own on empty stomach and then nothing apart from water for at least an hour after.

Many take early morning, on waking, but it may be more convenient and possibly more effective taken at bedtime.

verywell.com/should-i-take-...

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

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Hi.yes I had all those test done by NHS endo..all normal..

Last blood work showed as follows..

Tsh.. 0.04

T4...18

FT3 1.4

Vit D normal

Adrenal normal

Cortisol normal

Caelliac normal

Fibromyalgia neg

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Oh no tsh 3.67... they were done in August..

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Also not taking any other vits.. have a good diet, mostly poaelo..I take meds at bedtime after no food for at least 2 hours..

I'm not taking hrt..I have no antibodies, Endo believes I'm D2 polymorphism ?

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Can you add the ranges on these FT3 and FT4 results

Vitamin D, you need actual result

Ferritin, folate and B12 need testing

TPO and TG thyroid antibodies need testing

If 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. Dairy is second most common.

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

The only way to know if gluten free diet helps is to try it

TSH should be under 1.5 on Levothyroxine

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I'll find the results given and give clearer findings..I know I'm not gluten intolerant neither do I have elevated antibodies, all they is normal.

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The only way to know for certain if gluten is a hidden problem is to try strictly gluten free diet for say 2-3 months

Many of us are astonished to find it is a problem. You do not need any gut symptoms

Leaky gut is very common with hypothyroidism, then gluten can cross into bloodstream

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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