Levothyroxine Gel Capsules (no fillers) in the ... - Thyroid UK

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Levothyroxine Gel Capsules (no fillers) in the UK - anyone take these?...

Nicola-Jane profile image
19 Replies

9 years after my TT I had to drop my Levo dose down from 125 to 50 due to t4 toxicity. I have been taking 50 for a year and a half now and my t4 levels are low. I also take 20 t3 a day and a variety of supplements after a comprehensive blood test showed numerous borderline low levels. However... as I say my t4 levels are very low and I still suffer numerous hypo symptoms but I can't raise my Levo because it makes me feel ill again (main symptom is brachycardia). A second opinion endo wrote to my GP suggesting he prescribe NDT. I am seeing my regular endo next week and I am going to ask him to do the same, that way I may have a chance of getting the GP to prescribe NDT on the named patient basis. I am considering alternative synthetic options though and would like to try the t4 capsules which contain no fillers or dye just: t4, glycerin, gelatin and water. One brand is Tirosint which is only available in Italy and Switzerland at the moment so this would also have to be prescribed on a named patient basis. My pharmacist did tell me today that there is a t4 capsule, which is essentially the same as Tirosint, available in the UK. BUT... they come in packs of 50 100mcg capsules at a trade cost of £198!!! Compared to the £2 it costs the GP to prescribe Levo tablets I think he's going to have a heart attack. My pharmacist suggested I just casually ask in my appointment, saying that I think I'm allergic to the fillers in tablets, for the capsules and hope he doesn't notice the price when he looks it up lol... So... has anyone here used/or is using gel capsules? If so, have you noticed any difference and how hard/easy was it to get on prescription?

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19 Replies
helvella profile image
helvellaAdministratorThyroid UK

The only capsules in the UK that I have heard about are those made to order in specialist pharmacies such as Martindales. Extremely expensive - as you say.

Tirosint is available in at least the USA as well as Europe.

Their USA site is here:

tirosint.com/

Rod

shaws profile image
shawsAdministrator

If you have been recommended to try NDT, I would as it is more synergistic to our bodies that synthetic meds.

If you have sensitivities these two are hypoallergenic and the second has only two fillers. Both are by the same company who has produced for 75 years without inconsistencies.

nature-throid.com/

wpthyroid.com/

PS. When you take T3 your T4 will be lower.

in reply to shaws

Hi Shaws, why would your T4 be lower if you are taking T3. I thought if affected your TSH rather than your T4.

nobodysdriving profile image
nobodysdriving in reply to

If your TSH is not suppressed (so your thyroid is still producing some hormones), then when you take combination therapy (T4 and T3 meds combined) the pituitary gland senses the hormone in your blood...

T3 is the 'active' hormone, that which your cells will allow in them to do the work (T4 cannot get into the cells, it needs to convert to T3 first)....

The pituitary thinks: good I have T3 in my blood I don't need to 'panic' and I can tell the thyroid gland not to produce so much T4 anymore and the T4 production goes lower.

It could well be that in the original poster's case the thyroid is not producing any T4 but what is in the blood tests is what she ingests daily with her T4 meds. And also part of what she ingests is converted to T3 anyway, bringing the T4 numbers in the blood even lower.

Does that make any sense now?

Nicola-Jane profile image
Nicola-Jane in reply to nobodysdriving

I had a total thyroidectomy 10 years ago. I therefore do not produce t4. My t4 is under range (as is my t3 without meds) but I cannot raise above 50mcg for some reason. That is why I am looking at other options.

nobodysdriving profile image
nobodysdriving in reply to Nicola-Jane

Ok, not having a thyroid is the same, you still do not need T4, in this case it is low just because you are converting some of it but you don't 'need' it anyway. What I mean is: you only need what makes you feel well not what makes your blood tests look pretty :D

Nicola-Jane profile image
Nicola-Jane in reply to shaws

An endo has advised I use NDT but he will not prescribe. He has written to my GP to advise he prescribe but I am yet to have that fight!

shaws profile image
shawsAdministrator

If you take levo alone (T4) it should convert some to T3. Usually, too, if T3 is added the T4 is reduced. Therefore the T4 will be lower. This is a link which I think will be helpful and self-explanatory as it says the Free T3 and Free T4 tests are better indicators - cytomel is USA T3.

healthboards.com/boards/thy...

Nicola-Jane profile image
Nicola-Jane in reply to shaws

I always have ft4 and ft3 testing. My ft4 is under range. I am total thyroidectomy on 50mcg daily of Levo and cannot raise without symptoms. My ft3 is well under range without meds and raises to mid-range after meds at 20mcg split into 10mcg twice daily.

Pepekins profile image
Pepekins in reply to Nicola-Jane

I don't really understand why someone without a thyroid gland can feel ok on only 50mcg as obviously you are not getting any other hormone from anywhere else. I started on 150 13 years ago, gradually gone down to 125 then 100/125 alternate days. 100 is not enough for me so I am interested how you can manage on so little.

helvella profile image
helvellaAdministratorThyroid UK in reply to Pepekins

As I read it, Nicola-Jane is also taking T3.

Nicola-Jane profile image
Nicola-Jane

I have asked my endo for Tirosint. The cost is £198 for 50 days supply (at 100mcg a day) plus around £150 for importation cost from Switzerland... He's referring to the BTA... I'm not holding my breath!

helvella profile image
helvellaAdministratorThyroid UK in reply to Nicola-Jane

One of the real downsides to Tirosint is that you cannot (apparently) do anything to take half a gel. This has been reported by some as making it difficult to manage. If the cost weren't such an issue, it would be obvious to suggest something like two doses - 25 and 50, or 25 and 75 - so you could adjust doses more readily.

Rod

Nicola-Jane profile image
Nicola-Jane in reply to helvella

No I can imagine you can't split a gel. That's not the issue for me. My endo wants me to increase to 100mcg and I want to, especially as I am working on gut issues and cell inflammation right now. My iron and vitamins and minerals are up so I'm hoping that conversion will get better in the near future. At the moment I can't increase my Levo above 50mcg. It makes me toxic.

helvella profile image
helvellaAdministratorThyroid UK in reply to Nicola-Jane

But it becomes an issue if 100mcg is too much, or too little. If you find you need, say, 125.

Rod

Nicola-Jane profile image
Nicola-Jane in reply to helvella

I hear you but I have to try because 50mcg is just too little. It is not giving me enough in reserve to convert (if and when that happens properly).

helvella profile image
helvellaAdministratorThyroid UK in reply to Nicola-Jane

Absolutely - it seems very well worth trying.

And I wish you the very best with it. Do let us know, please. :-)

Rod

Nicola-Jane profile image
Nicola-Jane in reply to helvella

I'm not holding my breath. Can't see any way my endo will approve the cost (on NHS), they also won't prescribe NDT and sceptical about t3 only as he won't prescribe above 20mcg! I've just done a supplement protocol with my FMD to rid a virus, which seems to have done the trick. Now I'm supplementing for digestive track and gut issues to help heal inflammation and started gluten free today. If that doesn't help matters, I may have to make the decision to self medicate.

Maddux123 profile image
Maddux123 in reply to helvella

Today is 2018 I am living in the United States I have fight with my doctor, That I was allergic to the synthetic today his partner it at the office said why don’t you get her to try the Terrace In but I was allergic to the synthetic today his partner at the office Said to try the gel capsule it and I can actually get them and 13 mg he said I can either have 13 or 25 I still let’s start out slow with a 13 I hope this works guys I hope I don’t have brain fog and I hope my throat doesn’t swell up because this is pretty much my last option

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