Endo Letter

[Lucky14]

Got some of my latest bloods back. Endo recommending the trial of T4 & T3. Not sure too much of what the rest of the letter meant. But will discuss that at my next appointment.

[SeasideSusie Remembering]

Lucky14

So your endo is actually lowering your overall dose if you currently take 200mcg Levo as mentioned in a previous post.

20mcg T3 is the equivalent of approx 60-80mcg Levo, so with a reduction of your Levo to 100mcg you will be getting the equivalent of 160-180mcg Levo.

What are your latest results he is basing this on? It might have been better to start with 5mcg T3 daily and gradually raise that dose and gradually reduce your Levo as and when necessary.

[Lucky14 in reply to SeasideSusie]

Thanks for your reply. He is basing this on my previous results as they didn't re-check thyroid at hospital. And yes I'm currently on 200 levo. Not sure what to expect, but also a little bit excited if i don't feel my usual fatigue.

[SeasideSusie Remembering in reply to Lucky14]

Lucky14

What were your previous results then?

There is every chance that you may feel more fatigued and more symptomatic, as I said your overall dose is being lowered.

[Lucky14 in reply to SeasideSusie]

Think these are the most up to date ones, I'm at work just now so can't check home files.

TSH 0.04 (0.35-5.00)

T4 19.7 (9.0 - 21.0)

So are you saying I would be better staying on the 200 levo and adding 5mg twice daily ?

I'm waiting for my GP to get in touch regarding dose change and i want to be fully armed. Thank you.

[SlowDragon Administrator in reply to Lucky14]

As SeasideSusie says, That's a huge drop in Levo. And a huge starting dose of Liothyronine

Liothyronine needs to be started very very slowly

Suggest you reduce Levo by 25mcg and start with just 5mcg T3 in morning. After week, consider adding another 5mcg T3 in afternoon. Perhaps with further 25mcg drop in Levo (but that might not be necessary)

Hold at that for 4-6 weeks and retest (privately if necessary). You must test FT3, FT4 and TSH

Depending on results, depends on what you do next

You MUST have good levels of vitamin D, folate, ferritin and B12 before starting T3

Can you add most recent results and ranges

Do you have Hashimoto's? Also called autoimmune thyroid disease diagnosed by high thyroid antibodies. If so, are you on strictly gluten free diet

[SeasideSusie Remembering in reply to Lucky14]

Lucky14

I certainly wouldn't reduce Levo to 100mcg. As you don't actually have a current result - which I think is rather stupid of the endo not to test before changing your dose/adding T3 - then I wouldn't reduce by more than 25mcg. And I would only add 5mcg T3 daily to start.

Has your FT3 ever been tested? If you don't know where in range that is, how on earth does the endo know it's not at the top of the range, and adding T3 would push it over range? I really do despair at their stupidity at times.

Everything that SlowDragon has said is correct. I wouldn't go past 10mcg T3, or would I reduce Levo any further than the initial 25mcg, unless you get full TSH/FT4/FT3 tested, and you should wait 6 weeks after the dose change to test.

In fact, if you are discussing this with your GP it would be wise to tell him that you don't have any current results and your endo is basing this change of dose/adding T3 on old results. I would suggest to him that before you do anything you should have TSH, FT4 and FT3 tested so that you know your levels and what changes to make. And get the vitamins and minerals tested that Slow Dragon has mentioned if you haven't already had them done. Plus antibodies.

Two things come to mind:

1) The endo doesn't know what he's doing or

2) He wants your trial of T3 to fail

[Lucky14 in reply to SeasideSusie]

These were the last results i got with T3 tested privately. My GP however refused to act on them though, as would only use NHS results.

TSH 0.03 (0.27 - 4.20)

T4 120.9 (64.5 - 145)

FREE T4 26.40 (12-22)

FREE T3 5.16 (3.1 - 6.8)

My ferritin always low, was 9 about 3 months ago (15-200) just finished course of iron tablets. Tbh it never gets higher than 58.

B12 was 376 (200-900) was going to start the B12 sublingual tablets again, but wanted all my bloods checking first.

Folate = 6.7 (3.1 -20)

Yes also have high anti-bodies as per blue horizon results.

Not sure if the endo requested thyroid bloods now on the morning of all the other tests.

My GP receptionst just called to say my new prescription ready, and they will retest bloods in 6 weeks.

My levo tablets are in 100's so i wouldn't be able to take 125. The whole thing is a nightmare. Has taken me years to see an endo, and I'm happy he trying something different, but if i go to my GP armed with all this info he will just ignore it, and i will be back to square one.

I'm also back at the endos in August for follow up appointment.

Thanks

[SeasideSusie Remembering in reply to Lucky14]

Lucky14

When were those private blood tests done?

[Lucky14 in reply to SeasideSusie]

2 years ago

[SeasideSusie Remembering in reply to Lucky14]

Lucky

OK, so the FT4 and FT3 aren't really relevant now.

Is your ferritin being retested? You can help raise ferritin by eating liver regularly, no more than 200g per week.

Folate could do with being at least half way through range. A good B Complex containing methylfolate will help there.

As you have Hashi's (confirmed by raised antibodies), are you strictly gluten free and supplementing with selenium l-selenomethionine 200mcg daily to help reduce antibodies? Keeping TSH suppressed can also help reduce antibodies.

Neither SlowDragon nor I were recommending that you reduce your Levo to 125mcg, we said to reduce by 25mcg, so take 175mcg daily. If you just have 100mcg dose tablets, you could achieve that by cutting some in half to give 50mcg, then take 200mcg one day, 150mcg the next day, average 175mcg.

Advice about starting T3 at 5mcg and increase gradually still stands, also SlowDragon's advice about optimal levels of vitamins and minerals.

However, I still think your Endo doesn't really know what he is doing - most of them don't which is why a lot of trials of T3 don't succeed and the patient ends up having it taken away.

[Lucky14 in reply to SeasideSusie]

I would need to request a ferritin check from my GP, they don't usually seem that concerned, and the Endo i just saw said there was no proof that ferritin, folate or B12 needed to be in the upper range. So probably all just be a complete waste of time (my appointments etc). I did introduce liver into my diet, have to say it was disgusting lol. And unfortunately no I'm not gluten free.

Thanks for all the advice I'm going to cut & paste the parts on the medication etc and show to my GP but not holding out much hope. I've a few sleeves of levo left, but when they finish it will be impossible getting extra for using 175 as recommended on here instead of 100.

I do appreciate you all taking the time to help & advise me.

[SeasideSusie Remembering in reply to Lucky14]

Lucky

You may find adopting a strict gluten free diet will help, many Hashi's members have been successful in reducing antibodies doing this.

Hashi's information:

Gluten/thyroid connection: chriskresser.com/the-gluten...

stopthethyroidmadness.com/h...

stopthethyroidmadness.com/h...

hypothyroidmom.com/hashimot...

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

[Angel_of_the_North in reply to SeasideSusie]

He actually says to take both levo and T3 twice a day.

[Lucky14 in reply to Angel_of_the_North]

Just spoke to GP and she says yes to taking the Levo 100 twice a day plus the other stuff 10mcg twice a day.

[Angel_of_the_North in reply to Lucky14]

Wow! Someone who does know how to use a comma! But no real advantage to taking levo twice a day (you could just take 200mcg once a day), unless you find it easier to remember to take the same dose twice a day (which is probably the doctor's thinking).

[shaws Administrator in reply to Lucky14]

They don't have much experiences of T3 but it is good he is, at least, offering you an alternative. I wouldn't bother splitting doses (I am not medically qualified) but have done the rounds of levo: levo/T3: NDTs and T3 only.

Your stomach has to be empty and splitting doses can interfere with our dialy living, i.e. we have to allow enough space between food and hormones. Our digestion is also slower due to hypo. After all it is a life-time of taking thyroid hormones and the easier the better.

Research has shown that the combination of T4/T3 should be 3 to 1 combination. Go to page 80 on the following link:-

tpauk.com/images/docs/reduc...

I follow one of TUK's Advisers who was an expert in the use of T3 and he took his once daily dose in the middle of the night. His patients only took one dialy dose of NDT or T3 (for thyroid hormone resistant patients).

Many Endos know that T3 isn't as long-lasting as levo but they don't understand the effect of it and make assumptions. One daily dose of T3 saturates the T3 receptor cells (within a few hours I believe ) and then its work of that one dose lasts between one to three days.

drlowe.com/educational.info... Chapter 7.Thyroid.pdf

[Angel_of_the_North]

I think whoever wrote that letter needs to revisit comma use. It says that you should take 100 levo and 10 T3 twice a day = 200 levo and 20 T3. Perhaps that is correct, but I suspect it means 100 levo and 20 T3. Or just interpret it as written - he might know how to use commas. But it would be usual to drop levo slightly before starting T3.

I wouldn't start on that much T3, but on 5mcg once a day for a few days then 5 x 2 for a few days to a week, and so on.

it says that your cortisol is low but he doesn't think you have Addisons but will check for Addisons antibodies (however you might have a pituitary problem causing low cortisol). The coeliac test was negative and the other results aren't in.

[Lucky14 in reply to Angel_of_the_North]

Thanks, will get GP to clarify for me. Tablets are coming in form of 5mcg to be taken 2 x 2 daily. So can start with 5. Thanks

[SlowDragon Administrator in reply to Lucky14]

You are extremely fortunate to get to trial Liothyronine (T3) but you MUST get vitamin levels tested and optimal

Suggest you get vitamin D, folate, B12 and ferritin tested by GP or privately first. Plus would be good idea to check TSH, FT3 and FT4 before starting

Very, very many with Hashimoto's can't tolerate T3 without going strictly gluten free

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

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...

As SeasideSusie says, they are often keen for T3 trial to fail.

With low cortisol you will likely need to start extremely slowly

[Lucky14 in reply to SlowDragon]

We will see if I’m lucky, doctor just called to say there’s a problem getting that prescription as health board won’t approve. You couldn’t write this **** 🙈🙈

[SlowDragon Administrator in reply to Lucky14]

Many many CCG’s try to block

(Cost to NHS for T3 is astronomical)

You may need private prescription.

[SlowDragon Administrator in reply to Lucky14]

Normally Endo supplies first 3 months trial via hospital prescription

Once trial is over and assuming successful, only then is care and cost taken up by GP practice

Your endo should have provided prescription. Is hospital in same CCG?

See Improve Thyroid Treatment campaign on Facebook

Meanwhile getting vitamins tested and optimal is first step

Then trying gluten free diet

[Lucky14 in reply to SlowDragon]

Thanks for your help. Will request another blood test. Dr said she is going to contact endo. If prescription had been for 20mcg I would have got it today as chemist had those, just not the 5,s

[SlowDragon Administrator in reply to Lucky14]

The 5mcg are actually cheaper apparently

20mcg are £9 per tablet approx

£258 per box of 28

[Lucky14 in reply to SlowDragon]

Seriously what they made of 24 carrot gold, it’s a joke isn’t it

[SlowDragon Administrator in reply to Lucky14]

bbc.co.uk/news/business-420...

[Angel_of_the_North in reply to Lucky14]

No but the NHS has a very poor purchasing policy and allows itself to be ripped off by suppliers - T3 is only a few euros a pack in the rest of Europe

[Lucky14 in reply to Angel_of_the_North]

Yes might have to sorce it that way, if it boils down to that

[Lucky14 in reply to SlowDragon]

Chemist just called and said after much disagreement my prescription has been approved. So fingers crossed i should pick it up next week.

[Marz in reply to Lucky14]

How are things for you now you are on T3 ? Do you take VitK2-MK7 with your VitD and Magnesium ? Could help your blood pressure too - 😊

[Lucky14 in reply to Marz]

Hi Marz, i noticed a huge improvement in my stomach issues and blood pressure was so much better, as was my skin. Then on my second appointment i had to see a different endo who advised the dosage i was taking was infact incorrect and should only be 100 Levo & 20 T3. I advised i had been feeling much better, but she reduced the dose anyway. I didn't fight it as i knew it wouldn't work and i wanted to prove them wrong. 3 weeks after lowering the dose i felt dreadful and my BP had gone through the roof and my stomach issues re-appeared. I wrote to the endo who wrote back and agreed i needed an increase in the levo, so now I'm taking 150 levo and 20 T3. Feel great, blood pressure back down. My only disappointment in it is i'm still the fatigue. Having said that my ferritin back down at 30, i couldn't stomach the prescribed pills, so was trying to improve it myself with feraglobin and eating chicken liver pate and black pudding, as suggested on her on another post. Tried and failed with liver lol.

So ultimately i need to get my ferritin up and see how i feel. But big improvement. Endo happy now too, so fingers crossed they keep me on the T3.

[Marz in reply to Lucky14]

Have you had an Iron Profile done ? - sometimes Ferritin ( stored Iron ) can be low and yet the Serum iron can be fine Black Pudding had my Ferritin going wild !

Maybe more B12 injections are required - for the energy levels to improve. Have you read the book - Impaired Sensitivity to Thyroid Hormone - by Hugh Hamilton - available on Amazon for Kindle ...

[Lucky14 in reply to Marz]

I haven't read that book, so think i will look it up. I'm not on B12 injections. Drs say my B12 is fine. I am seriously considering self injecting next year though to see if any improvements. My ferritin always low, but my iron stores are fine.

[Marz in reply to Lucky14]

The Author is on the Forum - HughH - I found it a good and easy read on my phone ! I can buy B12 syringes and B12 phials OTC here in Crete - I am so lucky !

Took me some time to do the injections myself - but now I am fine ... Wishing you well ...