Natural Desiccated thyroid

[LCO55]

I wondered if anyone in the UK has tried natural desiccated thyroid and if so what brand they used. I'm only on 25mcg but have really struggled with terrible side effects. I'm now wheat and dairy free but still not right. Any information would be much appreciated.

[helvella Administrator Thyroid UK]

If you search, you could find over 64,000 posts which mention Natural Desiccated Thyroid!

healthunlocked.com/thyroidu...

Remember, none is approved in the UK hence obtainability is a primary issue.

My rest of the world document has details of several.

helvella's medicines documents (UK and Rest of the World) can be found here:

helvella - Thyroid Hormone Medicines

helvella has created, and tries to maintain, documents containing details of all thyroid hormone medicines in the UK and, in less detail, many others around the world.

This link takes you to a page which has direct links to the documents from Dropbox and Google Drive, and QR codes to make it easy to access from phones.

The UK document contains up-to-date versions of the Summary Matrix for tablets, oral solutions and liothyronine available in the UK.

helvella.blogspot.com/p/hel...

[SlowDragon Administrator]

As per your previous post you are in need of next dose increase in levothyroxine to 50mcg

50mcg is standard starter dose levothyroxine

ESSENTIAL to test vitamin D, folate, ferritin and B12 levels too

Vitamin levels need to be at GOOD levels

Likely to need further increase in levothyroxine after next test

It’s probably too soon to consider NDT

Virtually impossible to get Armour or Erfa prescribed on NHS

Lots of people are prescribed privately

See list here

healthunlocked.com/thyroidu...

[LCO55 in reply to SlowDragon]

They're keeping me on 25 as when I go up to 50 I get even sicker so Dr is keeping me in that. I'm on wheat and dairy free diet which has helped with the sickness slightly but am still very unwell.

[SlowDragon Administrator in reply to LCO55]

Hardly surprising

Levothyroxine doesn’t top up failing thyroid, it replaces it

Most people when adequately treated will be on at least 100mcg levothyroxine per day

You may need to increase dose to 37mcg initially

Cutting a 25mcg tablet in half

It’s very common to initially feel worse when increasing dose

It takes 6-8 weeks for each dose to have full effect

Wockhardt is very well tolerated, but only available in 25mcg tablets. Some people remain on Wockhardt, taking their daily dose as a number of tablets 

As you are taking Wockhardt try adding half tablet separately

If taking 25mcg waking, add 12.5mcg late afternoon or bedtime

You might do better on Aristo

Teva contains mannitol which upsets some people

Aristo is also lactose free but doesn’t include mannitol in it

Aristo (currently 100mcg only) is lactose free and mannitol free. 

March 2023 - Aristo now called Vencamil

healthunlocked.com/thyroidu...

 

List of different brands available in U.K.

thyroiduk.org/if-you-are-hy...

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.

Government guidelines for GP in support of patients if you find it difficult/impossible to change brands 

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

If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient. 

If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.

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...

markvanderpump.co.uk/blog/p...

markvanderpump.co.uk/blog/p...

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)

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

ESSENTIAL to get vitamin levels tested

Insist GP test vitamin D, folate, ferritin and B12 if not tested yet

[RedApple Administrator]

LCO55 'I'm only on 25mcg but have really struggled with terrible side effects'

It is actually more likely that the symptoms you have are because your dose of levothyroxine is too low, rather than being side effects of the medication.

'nausea, weakness, lethargy and brain fog. ' are all symptoms of hypothyroidism i.e. not enough thyroid hormone.

As already advised, you need an increase from your current 25mcg to 50mcg. It can take a long time to reach your optimum dose of thyroid medication, and it can be a bumpy ride along the way.

It's too soon in your thyroid medication journey to be changing to desiccated thyroid. You need to have patience (we all know that's really hard), and titrate your levo dose to optimum before you can properly assess it's suitability for you.

[LCO55 in reply to RedApple]

I tried 50mcg but was really ill on it. I didn't know that the symptoms of not enough thyroid meds were nausea, lethargy and brain fog. Which I've got all the time. My TSH came down to 4 from 22 on 25mcg but still feeling ill, should I maybe try to go up to try to eliminate my symptoms. I really thought it was the higher the medication the worse I felt so this is very interesting.

[LCO55 in reply to LCO55]

By the way thank you for this. Much appreciated.

[RedApple Administrator in reply to LCO55]

Some of us need to titrate the dose very, very slowly. I too struggled with this, and even got taken to A&E because my symptoms on 50mcg were so bad. It sounds melodramatic to say that I felt like I was dying, but that's exactly what I and many others here have experienced in the early stages of recovery.

Unfortunately, our GPs don't understand much at all about this, so we end up having to figure it all out ourselves.

It took a long time for your body to become badly hypothyroid with a TSH of 22. It will take a long time for it to get used to the arrival of more thyroid hormone via a different route (i.e. coming from your digestive system instead of your thyroid).

Rather than jumping straight from 25mcg to 50mcg, try adding 12.5mcg at a time. e.g. try 37.5mcg daily for a week, then 50mcg. Or, even more slowly, alternating 25mcg one day, 37.5mcg the next.

If you don't have the appropriate tablets to do this, explain to your GP what you want to do and ask for prescription of 2 x 25mcg tablets instead of one 50mcg tablet. Then you can split one of the 25mcg tabs to get 12.5mcg.

A TSH of 4 is still too high for most of us. Although GP will say it's ok because it's 'in range'. You'll ideally need to get TSH down to at most 2, probably nearer 1. That's where most people feel best.

[LCO55 in reply to RedApple]

Thank you for this and I know exactly how you feel, that first weekend I literally thought I was dying I felt so bad and was so sick. Diet has helped a bit to tolerate my medication.I'll definitely look to splitting my 25mcg tablets even though they're tiny, that's a great idea.

I'll speak to my doctor on Tuesday about this.

It's comforting to know it's not just me. I feel a bit better knowing it can be sorted. Thank you.

[RedApple Administrator in reply to LCO55]

We're here for you, so come here for help whenever you need us 😊

[RedApple Administrator in reply to LCO55]

There is just one brand (TEVA) that has a 12.5mcg tablet. It's best not to mix brands though, so if you decide to try the 12.5mcg tablets, make sure you get the TEVA 25s prescribed as well.

[LCO55 in reply to RedApple]

I've tried Teva and they made me feel really ill. I was on Accord 50 at the beginning but that was awful probably too much to start on, now I'm on Wockhardt 25 which are not too badly tolerated. I've just halved some tablets and will start tomorrow. Wish me luck 🙄

[RedApple Administrator in reply to LCO55]

Another thing you can try is 'split dosing'. I found I couldn't tolerate all the levo in one hit. Taking it in two daily doses worked better for me. e.g. you could try 25mcg in the morning (empty stomach, half hour minimum before eating etc.), then the other part of your dose at bedtime (2 hours after last eating).

Doctors will likely scoff at this, as they don't believe it makes any difference, but quite a few of us find split dosing our levo is more tolerable.

[Hedgeree in reply to LCO55]

Hi LCO55,

I'm just echoing what RedApple says. When I started on levo last August I couldn't tolerate it at all. It made me feel very unwell with digestive problems as I'm lactose intolerant but also bad chest pains that were very scary.

So once I found a suitable lactose free tablet I split them into tiny approximately 5mcg pieces and started very slowly titrating upwards that was the only way that I could do it.

I'm now on 37.5mcg but it's taken me since August to get to that dose.

Good luck.

[LCO55 in reply to Hedgeree]

Yes this seems to be the case. I've tried TEVA Lactose free and was worse on that but I'm now tolerating Wockhardt 25mcg and am very slowly titrating up from tomorrow. The dairy and wheat/gluten free diet is definitely helping but I'm still lethargic, nauseous and have brain fog but hopefully that will get better as I go upwards.

[pennyannie]

Hello LCO :

I am self medicating with Natural Desiccated Thyroid and there are several websites offering all the thyroid hormone replacement options without a prescription and I am much improved.

However T4 - Levothyroxine worked very well for me for around 8 years - and the easiest and ' free " if diagnosed and with a prescription in the UK.

What were you diagnosed with - was it Hashimoto's - an auto immune thyroid disease as this maybe causing some of issues - do you have a result there for antibodies and can see high over range TPO and or TgAB readings - hence the initial prescription. ?

There are various brands of T4 and maybe the fillers in the band you have are the issue?

We generally feel at our best when we build up the dose over the course of a couple months by having blood tests every 6-8 weeks to monitor progress and find we feel at our best when our T4 is in around the top quadrant of its range with the TSH under 2 possibly under 1 and in the lower end of it's range.

If with Hashimoto's you might like to read around on Dr Izabella Wentz's website and research as many forum members find they need to heal their gut before make much progress with any thyroid hormone replacement.

thyroidpharmacist.com

I am post RAI thyroid ablation for Graves Disease 2005.

[LCO55 in reply to pennyannie]

Thanks for this response. I've got thyroid autoimmune problems so I'm going to try and stick with the medication and see if upping my dose helps.

[pennyannie in reply to LCO55]

Yes I think it's the best first move at the moment -

check out the link to Dr Izabella Wentz as many forum members have vastly improved their health once they have healed their gut - which is where the Ai component starts.

[Jaydee1507 Administrator]

Just for reference the substance that people with autoimmune thyroid disease need to eliminate from their diet is gluten. It is in quite a few more things than just wheat and you probably need to do a lot of label reading to work out where it is hidden if you want to avoid it.

celiac.org/gluten-free-livi...

[LCO55 in reply to Jaydee1507]

Yes I'm doing that and dairy too and my stomach is slowly getting better. I'm just eating lots of fresh food.

[SlowDragon Administrator]

Symptoms of hypothyroidism 

thyroiduk.org/wp-content/up...

As soon as we start taking any replacement thyroid hormones, your own thyroid starts working less hard, as shown by drop in TSH…….so until you are on high enough dose of levothyroxine you actually initially become more hypo

That’s why it’s important to increase dose levothyroxine as fast as tolerated

Each increase in dose takes 6-8 weeks to have full effect

Then ready for next increase

Standard starter dose of levothyroxine is usually 50mcg, unless over 65 years old

Starting on only 25mcg levothyroxine can make symptoms worse as it’s such low dose

Typically we need several increases in dose levothyroxine over first 6-12 months

Bloods should be retested 6-8 weeks after any dose or brand change in levothyroxine

Guidelines for eventual dose is that it’s approx 1.6mcg per kilo of your weight per day …..Some people need more than guidelines ……a few people need a bit less. Unless extremely petite that’s likely at least 100mcg per day

Optimal vitamin levels help tolerate increasing dose of levothyroxine and reduce symptoms

[LCO55 in reply to SlowDragon]

This definitely makes sense. I'm going to start going up from 25 to 37.5 tomorrow and then if I tolerate that I'll carry on upping. I started on 50 and was extremely ill but hopefully now my body can tolerate it more. This has all been very helpful, fingers crossed it goes well.