Lio dosing! Also how to break up compounded lio capsules?

[Opal79]

I have some Lio questions if anyone can help please?

I currently take 112mcg levo (118 winter, 100 summer). Recently consulted a private endo who says im not converting and is putting me on 10mcg lio to add to levo to start. Couple of my concerns are -

1. I'm arranging compounded lio due to MCAS and other allergies. It's all sorted to get caps made up. However - I want to take my 10mcg dose in 2 or more doses through the day. This is due to both MCAS and needing to start on 2.5 / 5 for a few days to ensure I'm tolerating it well, and because I want to split twice but maybe split more again, later in line with circadian rhythm when I've figured it all out.

But the compounding company can't sell me spare caps as they can't be sure I'd dose them correctly, can I just get some and just do it myself? Is it safe? Also is it OK even to open a medication that way, would the air exposure have any effect? I'm probably totally overthinking but thought I'd check. Obvs with a tablet you can just cut them but this isn't an option for me as it must be compounded into capsules.

2. My Endo says I need to drop my levo from 112 (prescribed 125 by GP but never take they now as getting heart palpitations - being looked into by Cardiology but I think it's due to levo in general and conversion issues, Endo agrees).

But, Endo also wants to drop levo to 75mcg! I'm happy to drop to 100 or even 87 at a push, but 75 seems low to me.

When I asked him why he said that 10mcg lio = 50mcg levo hence dropping it and then my total thyroid meds would be 125mcg. I've spoken with a few people on other forums and a few have heard of this theory and seem to agree with it.

Others have said it's rubbish as it's 2 different hormones which I'm inclined to agree with. I mean T4 is inactive and T3 is active so how can they really be comparable?

I don't convert now but I used to at time of hypo dx 2.5 years ago. This could be due to a mpre recent diagnosis of Pernicious Anaemia, I'm a year into self injecting B12 every other day so it may have caused conversion issues too. At the beginning titrating on levo I was doing okay-ish so really don't mind taking it with lio espcially as B12 might eventually help conversion anyway.

But dropping it by this much seems wrong to me and I certainly don't want to get any worse before I get better. I'm bad enough as it is and have some cortisol issues too. Endo will also write to GP to ask the to reduce levo and I spent sooo long self advocating for higher doses of it so I don't want it to then drop only to find I need it increased again. Endo is terrible at responding and wanting me to book appts just for things like this, he won't discuss outside of an appt. I was probably going to go it alone soon anyway but currently using what's left of Benenden cover for free consults and may need his help with other hormone / pituitary tests before I do, so weighing up options atm.

Any help, links to papers, advice etc would be much appreciated if poss please! Sorry this was so long and thankyou! 🙏

[Regenallotment Ambassador]

On capsule splitting, I split 5mcg into 2 for a while, I slide the sides apart holding the ‘inner’ side upright. Then gently tapped the side and sprinkled my calculation of half of the powder into a few mls of water, swirled and drank that. (Weirdly it turned blue!) I'm not sure I could have done quarters though. The dose inside the capsule and filler may not be evenly distributed which is a worry. Could you get a temporary small batch of 5mcg from them?

[Opal79 in reply to Regenallotment]

Thanks very much, with roseway they still use a green dye on compunded unless you ask for it to be removed (I have asked for that as bad with dyes) so maybe your water activated it if a similar thing used?

But yes it does seem a risky thing to do re getting dose right doesn't it, especially at the start. I guess I could try the whole 10mcg in mornings with levo and see how it goes? But then if 10 is not enough in the end I'll still have the issue of not being able to split dose to twice a day later either.

I can ask roseway about small batch and see if they will but from what I remember the price it according to number of caps - 100 for £77 - not based on mcg. So they might agree, it'll just be alot more costly. I asked if I need to go to 20mcg later does that affect cost and they said no, price is the same as its the capsule amount. But if doesn't give me the freedom to split, so will probably cost alot more if I want to dose twice a day let alone even more if do circadian rhythm dosing

They do offer a liquid formula so maybe that's better? It's more expensive, I'll have to ask for prices as forgot but maybe works out abit cheaper that way if I multi dose?

Either way, Roseway need endo to state on prescription the compunding formula needed. I had to make an appt just to get endo to do that last time! Can't really afford to do that again and it takes ages to see him so v confused!

Thanks very much for your help I appreciate it

[Opal79 in reply to Regenallotment]

Hi again, sorry its me again!

Just wondered with your Roseway experience, did you use their prescriber? I was going to do that after 1 more endo appt. This was because I was getting endo free with my Benenden cover. But can't afford him each time, and im not that sure of him either. The roseway prescriber would be easier financially.

If you did use the prescriber, would you be able to answer any of the following please? No worries if not ofc

A. Do they prescribe over 10mcg lio?

B. Can they give prescriptions for you to use wherever? (As it looks like Roma 5mcg may be safe, easier to break, and hopefully cheaper for me!)

C. Will they write to GP and get them to drop levo? Endo wanted to and I want to continue on current dose if I can.

Thanks again for all your help 😊

[Regenallotment Ambassador in reply to Opal79]

Hi, yes I’ve been with the Roseway prescriber for some time.

They have recently altered their operating practices regarding T3 for new patients., you will need to ask them these questions directly. But as you ask in my case….

My prescription is for Thybon Henning.

They have written to my GP to confirm a private T3 prescription on my records and to explain my TSH will be supressed. 🌱

[Opal79 in reply to Regenallotment]

Ah thanks very much. I will ask them, although lately they've not wanted to share anything so hopefully they might!

That's great you can buy your T3 elsewhere and that they've written to GP and stated what's needed. I'd be inclined to wait abit until defintely ok on right doses I think , I just wouldn't want them to drop it and then GP go along with it and I could possibly worsen. I'll give them a try thanks again, very much!

[Regenallotment Ambassador in reply to Opal79]

Ah sorry I think you misunderstood me, my private prescription from Roseway is for Thybon Henning which I buy from them. (But I predate their change in stance on prescribing T3 to new patients). If they prescribe it’s for a prescription that they dispense, but they don’t only dispense compounded, hope that makes sense. 🌱

[Opal79 in reply to Regenallotment]

Oh thanks I'm sorry I misunderstood, am foggy! So Roseway prescriber can prescribe non compounded meds too, that's great thanks.

I will ask them however they've been very uncommunicative lately. When I first spoke on phone in August they told me 100 caps 10mcg compounded would be £77 and that liquid a little more expensive.But then I had to delay as had low cortisol and tests etc. Then recently emailed the same person who says that now they can't give quotes until uploaded prescription, so maybe this is part of their new practise?

I'm also concerned they won't prescribe over 10mcg now, although when we spoke they said it can be titrated with prescriber (so did my endo however he's alot more expensive and also difficult to deal with).

Sorry to ask more but did they lower your levo or anything? Again I guess they could have changed their protocol for that with new patients too though. Thanks very much again

[Regenallotment Ambassador in reply to Opal79]

I have had reason in the past to reduce and raise my doses of Levo and Lio and have done the is with their support and advice. I have never felt as though a change was imposed on me, by them or the GP. It’s always been my choice, being over replaced feels awful so I’ve been quick to address it.

[Opal79 in reply to Regenallotment]

Oh thanks for sharing that's so good to know. I feel my endo imposing it on me and would also like the choice. I've def been a little over replaced with levo before and reduced myself too its horrible isn't it? The advice you and others here have given has been so helpful. Thankyou so much for your time 😊

[TiggerMe Ambassador]

I agree this is total rot and the second time I've heard it in 24 hours...

"When I asked him why he said that 10mcg lio = 50mcg levo hence dropping it and then my total thyroid meds would be 125mcg.?"

So if you follow his 'logic' if you need 20mcg of T3 you would need 100mcg less of T4 and so on?? So does that mean he's keener on T3 only treatment?

posthinking01 added a great video earlier... bing.com/videos/riverview/r...

I wonder if this is the same chap?

So your last results 29/4/24...

Free T4 (fT4) 21.2 pmol/L (12 - 22) 92.0%

Free T3 (fT3) 3.2 pmol/L (3.1 - 6.8) 2.7%

T4:T3 Ratio 6.625 

I wouldn't make any reduction to your T4 dose as adding T3 will knock it back anyway, it's already within range and you only want to change one thing at a time or you end up totally confused

Get a repeat prescription in quickly for your T4 before he tinkers so you have some stock

[Opal79 in reply to TiggerMe]

Thanks so much. I'm so sorry I'm abit confused by the post you mean by posthinking01?

Also I'm guessing you saw my April results in another post of mine somewhere? Thankyou for looking if so.

Since April tests I dropped levo again to 112 at end of July, onky about 2 or 3 weeks before I had private endo bloods done in August wich was probably silly but didnt know I was getting tests so soon. I felt 118 was too much for summer as thinking I may differ in seasons?

Also as palpitations got worse again (they started in March following levo increase to 125mcg - I've since had a 24 hour ecg holter and awaiting results) so assumed levo was too high again or maybe it was something else as I'm still getting palps and recently went to 100 incase - like I'd been on for most of last year!

Also though this time last year my TSH rose and was 2.5 in November and nothing had changed with levo, I was still on 100 at the time. I also put on loads of weight, very quickly. Almost 3 stone in less than a year!

So put on 112mcg dose in Nov didn't help much and TSH stayed the sane but couldn't afford FT3/FT4.... but 125mcg increase in Jan brought on palps in March which haven't really gone so I guess it may not really be levo dosing but just taking it in general? I am however getting less palps again now on 100 this past week or 2, maybe that's the highest I can go before palps set in? And does that mean dropping levo to 75 from 100 is safer while taking 10mcg lio or will it still make me even worse before I get better?

Other people on my local thyroid group say its fine for him to drop it but I'm really not sure. They also say alot of them have seen the same endo and he then keeps them on the same 59mcg of levo but increases lio to 20, then 30 etc if needed. But won't that take me further back to feeling worse than I am now for 6 weeks before I go back?

Someone on here said 25mcg drop might be OK but no more. So I'm very confused. I'm sorry if I'm not making much sense im so foggy too

Btw my April TSH was 0.69 while on 118 but all my Aug results were as follows-

TSH 1.20 uU/mL (0.27 - 4.2)

FT4 18.9 pmol/L (11.9 - 21.6)

FT3 3.2 pmol/L (3.9 - 6.8)

(Also to add re palps, I think I had hashi and hypo for many many years before diagnosis 2.5 years ago. Remember telling GP about 7 years ago of the odd fluttering, randomly . She said was anxiety.l, as she always did. Huge gaslighting at my surgery forever! It was very infrequent but I would get the ectopic like a few beats quickly in one go. But back in march this year it was near constant , every other beat and I called an ambulance. They calmed down by the time they arrived so only 1 was recorded on ECG and A and E checked me over and then fine, but paramedic said to push for 24hr one which I got last week).

Thanks so much again

[TiggerMe Ambassador in reply to Opal79]

The post from posthinking01 contained a video which explains how thyroid hormones work

I would suspect your palpitations are due to low fT3, could also be low iron, b12, folate? /have you any recent results for vits and mins?

So based on your August results I still wouldn't suggest dropping any of your T4 dose and to just gradually add in T3

Things will start to improve once you have a bit more fT3 in your system 🤗

Could Roseway not compound you tablets or would that need a nasty you can't take?

[Opal79 in reply to TiggerMe]

Hi again TiggerMe and thank you so much for all this. I just watched the video and makes total sense thankyou. Ah so if palps are due to low FT3 and I'm playing with levo but only making small improvements, should I go back to 112 for now? Is that what you meant about staying on sane dose? Been on 100 a couple weeks and palps are not quite so bad or frequent on that. But it's a bad dose in winter I discovered

So 100 was my dose most of last year following a long titration, and was ok until Nov when TSH alone rose from 1.16 in Sept '23 to 2.3 in Nov. No difference in anything at all except started B12 injections July.

Then put on 112mcg Nov and TSH in Jan was 2.45. 125mcg did get TSH down to 0.69 in March but I think pushed my FT4 too high amd FT3 too low. I couldn't test those and dropped to 118.

But those April tests show FT4 was pretty high at 118mcg so I'm inclined to think I need 100 in summer, 118 winter and 112 mid seasons? Or is it likely not seasonal and all T3 based?

But now its October and I'm scared to increase to 112 again...but should I? Or go evem higher to 118 as heading in to winter?

I asked roseway if could do tablets but they can't unfortunately, it's just caps or liquid. I'm awaiting a liquid price. I will have to get endo to rewrite prescription now, meaning another appt in probably few weeks time! He doesn't do things outside of appts amd impossible to get info from

Roseway need him to state how to compound, which thjngs to exclude etc, and ofc I wasn't thinking before about splitting doses so decided on caps! So now either I ask him to write 5mcg caps which is fine except I have to pay double for them! Or if liquid less than double price caps I'll have to do that. At least with liquid I can play more with doing like 2.5mcg which is how I wanted to begin it as have mcas and allergies and just sensitive to meds in general. Eventually I'd like to do circadian rhythm dosing as per Paul robinsons books (yet to read but heard good things?)

Re vits etc they're all optimal as I take high doses needed on my B12 protocol. I self inject most days and last checks folate was 20, ferritin 119 (I take heme otherwise I'm never optimal), Vit D3 219 so could be a little better in terms of B12 protocol but almost optimal. Also taking high foses K2 and magnesium glycinate B12 therapy itself can and for me, will take a while to heal though so a work in progress .

Thanks again so much and I'm really sorry this was so long 🌸

[TiggerMe Ambassador in reply to Opal79]

Tricky isn't it, it depends how long you've got to wait for your T3, perhaps the middle ground is to alternate 100/112mcg?

Liquid T3 does sound more flexible but I've no experience of it and it doesn't get mentioned much...

MCAS is likely to linked to the mould issues 😕

Your Vit D is a bit high with the recommended range being 100-150 so a little saving to be made there by reducing your dose

I've read bits of Paul Robinson, another one of those variables that works for some, I find a single dose 4-6am works for me and is when my cortisol level is mid range

[Opal79 in reply to TiggerMe]

Thanks very much. Yes I think I'll be waiting a while for my T3 unfortunately so now its getting colder might try 112 again and see how it goes . Last November 112 wasn't even enough so perhaps it'll be OK to increase abit now? And if not I'll alternate for abit like you said?

Also re liquid, its in an olive oil and Silica gel base, so I should be OK. So frustrating though, I wish I could just get a normal T3 tablet and break it. But all brands have sulphites in which I'm allergic to. Sounds like just taking 1 x 10mcg compounded cap a day is a bad idea?

So another new issue is that Roseway won't give me a quote for liquid unless it's written on the prescription by endo! So I don't even know if it's affordable for me!! Then I need to wait for an endo appt fit weeks on end, to ask him to write the info on yet another prescription.

I also need to somehow persuade him not to write to GP getting them to lower levo to 75. Last time we were awaiting SST results so agreed to wait but I did say it takes so long to get my GP to change things that it'd be easier to keep it at 125 but I'll just take what he says (but really I'd keep levo more like 112). Seems very sneaky doing this but reading how ill people have felt lowering their levo starting T3 it feels like there no choice

Thank you yes I also suspect mcas largely from mould too, it's quite worrying.

With vit D it's a protocol that supports B12 jnjections - the nature of them means that without these doses of cofactors the B12 will utilise it too quickly and you end up deficient. So it's actually better for me to have higher levels. The K2 with it directs it to correct places in body rather than settling in tissues when it can be dangerous, and the magnesium 'locks' it on bones/teeth so I'm following it safely

Thats interesting about cortisol dosing thankyou, it sounds v individual for people? I guess I can look at it further down line? But would it best to start on a lower T3 dose if I can get prescription changed again? I feel like 10mcg a day is alot even if split into two, like ask him to write 5mcg caps. Instead can I start lower like 2.5mcg with liquid and build up slower please? Easier for mcas too.

Thanks a lot for all your help I really appreciate it

[TiggerMe Ambassador in reply to Opal79]

I've don't remember seeing sulphites mentioned?

Which of the excipients in Roma T3 can you not tolerate?

6.1 List of excipients

Maize Starch

Magnesium Stearate (E 572)

Shell Formulation

Gelatin

[TiggerMe Ambassador in reply to TiggerMe]

helvella sulphites in all T3?

[helvella in reply to TiggerMe]

No. Not as declared excipients.

However, I cannot speak for impurities and degradation products and metabolites.

Screenshot of UK liothyronine matrix

[TiggerMe Ambassador in reply to helvella]

That's what I thought... I had a rummage through earlier and couldn't find any that list sulphites... presumably "impurities and degradation products and metabolites" would still be the case with compound versions?

[helvella in reply to TiggerMe]

Difficult.

As far as impurities are concerned, we can only look at each excipient and research what is generally known. Aside from those with some form of SULF*** (or SULPH***) in their names, you can consider these examples.

For example, for Glycerin/Glycerol:

Glycerin is mainly obtained from oils and fats as a by-product in the

manufacture of soaps and fatty acids. It may also be obtained from

natural sources by fermentation of, for example, sugar beet

molasses in the presence of large quantities of sodium sulfite.

Synthetically, glycerin may be prepared by the chlorination and

saponification of propylene.

And Magnesium Oxide:

The magnesium

chloride decomposes into magnesium oxide and hydrochloric

acid.(19) Magnesium oxide may also be produced by the thermal

decomposition of magnesium chloride, magnesium sulfate, magne-

sium sulfite, nesquehonite, and the basic carbonate

5MgO 4CO2 5H2O. Purification of the magnesium oxide produced

through thermal degradation is carried out by filtration or

sedimentation.

And Sucrose:

Sucrose may also be contaminated with sulfite

from the refining process. With high sulfite content, color changes

can occur in sugar-coated tablets; for certain colors used in sugar-

coating the maximum limit for sulfite content, calculated as sulfur, is

1 ppm.

As far as degradation products and metabolites are concerned, you can start by considering whether the excipient concerned has any sulphur in it to begin with! Or if there is sulphur in one of the active ingredients or other excipients. If there is no sulphur, there you cannot get sulfites!

But for anything you cannot work out from the information in the Patient Information Leaflet, contact the manufacturer. And - if appropriate - make a Yellow Card report.

[TiggerMe Ambassador in reply to helvella]

🫤 I knew I'd get out of my depth on this one 😅

So Roma 5mcg... suggests no sulphites?

6.1 List of excipients

Maize Starch

Magnesium Stearate (E 572)

Shell Formulation

Gelatin

[helvella in reply to TiggerMe]

No obvious sulfites!

Contact Roma - that's what I would do.

[Opal79 in reply to helvella]

Thanks to you and TiggerMe for all this! Unfortunately sulphites can also be used in bleaching, and actually bleaching itself regardless can be a problem for me / people with mcas anyway. So it's very complex and always abit of a risk.

I kind of manage on my Wockhardt levo for example, as minimal excipients which is good for mcas. But still not ideal as I think the sucrose and/or mag stearate may be sulphited at some point in the process. Always a risk with mcas / allergies even if you contact the manufacturer - even if they can tell you what's not in the finished product, if they can't trace each ingredient back for you it's still an unknown and therefore poss unsafe!

So personally going to Roseway is a safer option for me, particularly as I already feel my levo excipients aren't ideal (but other brands are even worse! And I can't afford to compound my levo too!).

I hope this explains my situation better and for anyone else reading with severe allergens or mcas. I really appreciate both your help, thankyou so so much 😊

[Opal79 in reply to helvella]

Thanks for this, as I just explained to TiggerMe, it's not just sulphites. Iron oxides too, acacia, mannitol, gums, talc, sometimes corn starch and gelatin. But Teva on your list might be something I could possibly look at trying maybe? Only thing is my prescription from private endo now has notes written on it about compounding info needed for Roseway, I'm guessing this won't matter if I take it to an independent pharmacy maybe, can they ignore it? Thanks again for the info! I looked on this site before and thought I'd seen all brands so apologise!

[Opal79 in reply to TiggerMe]

Ah thanks its not just sulphites, other things too. When I checked on a list somewhere on here, there was nothing out-of all of them. I just checked EMC for Roma and has all the ingredients you listed - thanks so much- but it also stated iron oxides which I definitely can't have. Usually there's issues with iron oxides or any dyes, sulphites and then a couple of things too. That's odd that EMC list says them? Here's what I found...

Roma ingredients EMC

[helvella in reply to Opal79]

I've just replied - the titanium dioxide and iron oxide are ONLY in the capsules. And even then, only the 20 has both. It just tints the shell to make it possible to visually identify the three dosages as otherwise they would look identical.

[Opal79 in reply to helvella]

Oh I see thanks so much! Sorry for misunderstanding. So is the lower dosages in tablet form then? And so easier to cut and dose into 5 or 2.5mcg please?

[helvella in reply to Opal79]

No - all three dosages are capsules.

The 10 has titanium dioxide added which makes it creamy/off white.

The 20 also has iron oxide added (as well) which makes it yellowy/creamy.

[Opal79 in reply to helvella]

Oh gotcha thanks very much. So if my current endo prescription says 10mcg and states info for roseway about compounding, does this matter? And if it doesnt matter can I empty them into halves or quarters and put into spare caps? Thanks again and sorry for so many questions and confusion. The brain fog is very bad atm

[helvella in reply to Opal79]

The prescription has to be for the product to be prescribed. It can't switch from compounded to Roma - or vice versa.

The issue of splitting capsules is not easy to answer. Clearly it is not good practice but sometimes we have to do what he have to do. Personally, I would not try to stuff it back into another capsule but would use another small container. And I would be very wary of splitting into less than half. It is already difficult to judge, and exposes the contents to oxygen, light, humidity, etc. If you are getting down to quarters, that potentially leaves the contents exposed for three days.

[Opal79 in reply to helvella]

Sorry just saw your message about splitting the caps, thanks very much for your advice. Yes I see what you mean about exposure etc, I don't want to take risks really.

I would be splitting doses to take that same day so they'd be gone in a day rather than 3, so you mean not in a new capsule but add powder to some liquid or something?

I was originally thinking if I can dose 3 or 4 times a day for my cortisol then that's split in 4 so not OK. But if I asked Endo for new prescription of 2 x 5mcg rather than current 10mcg can I split those in half? So I can take 4 x 2.5mcg a day.

However maybe it's best all round for lio to be twice a day anyway to begin, and it's also sounding from what you said like it can't be put back in a cap even for the day is that what you meant please? Sorry more questions, and thanks again

[helvella in reply to Opal79]

The only reasons not to use capsules for storing the remaining substance are the difficulty of getting it back into the actual capsule shell and lack of any decent seal. People who fill capsules usually buy some device for filling them.

My mind was considering tiny glass jars such as Wilkinson Tiptree individual portion jam jars sometimes provided in cafes and restaurants! Small, easy to clean, decent lid.

[Opal79 in reply to helvella]

Thanks that's a great idea about the jars! I think I'd still like to put it in the caps as well, I was going to get some from amazon so I will look for some kind of tiny device in which to add it to a cap! The jar could be helpful for emptying it into, yes! Thanks again

[TiggerMe Ambassador in reply to Opal79]

Not in the Roma 5mcg which I take, only the 10 and 20mcg

Just thinking off the shelf options are going to be cheaper if not free from the NHS

[Opal79 in reply to TiggerMe]

Oh thankyou and I'm sorry I misunderstood. So are your 5mcg ones tablet or caps please? So I could cut if I want to start with 2.5mcg?

Yes I'd much rather pay as little as possible for them, I don't have much money at all for this. I dont suppose you know the cost at all please?

The 10mcg caps from Roseway are £77 for 100 so 3 months which I thought was quite good. But of course if I need prescription changed to 5mcg just for safely taking 5mcg a day it's £154! So about £50 a month which is so much. I still also feel I need to start with 2.5mcg as well, alot of sensitive people are saying that was best for them. (Advised for mcas too).

Perhaps I should ask some pharmacies if they stock it? If they do, will my prescription from endo be OK? It states 10mcg caps needed, 100 caps and fillers info as this was everything Roseway needed to know. Will anywhere accept this? It does say 10mcg and for 3 months, a large piece of paper with his writing on it haha, I'm hoping it's OK? Sorry for all the questions I have no idea of what I'm doing at all! I've only ever had levo from my surgery and my pharmacy usually stocks Wockhardt (until last time funnily enough)

So sorry for the confusion! Brain fog is off the scale , I apologise. And thanks so much for your time patience with me 😊

[TiggerMe Ambassador in reply to Opal79]

Roma is a capsule and first choice if receiving from the NHS, can you not have it prescribed via them? Seems easy to obtain though I doubt on the pharmacy shelf.

The NHS are charged £55 box 28 but I've no idea what the pharmacy might charge, your prescription would probably get you 10mcg but they are the ones that contain the excipients you know you want to avoid

[Opal79 in reply to TiggerMe]

Ah thanks. Both my GP and lab are completely useless about T3. My GP eventually agreed to refer me privately to see an Endo using my Benenden cover because I was still symptomatic on my levo. I took months fighring to get levo increased as it was, which just caused palipations in the end i think. They are really clueless and still think I'm talking rubbish about my FT3 being too low despite a letter from Endo. They were like this about my advocating for B12 injections. In the end I was diagnosed privately and self injecting regularly but they still won't offer injections even now.

But ironically because he is an endo, they will still drop levo if he asks, so it's doubly difficult!

So to clarify do you mean because the prescription says 10mcg then I have to be offered 10mcg of Romabata ny pharmacy? I couldn't ask for 2 packs of 5mcg Roma? I think that's what you mean? (Sorry!)

I'll phone the independent pharmacy for quotes but this isn't sounding hopeful for my pre existing endo prescription of 10mcg really. It sounds as though either I use for 3 months and split it myself or see him to get another prescription stating 5mcg?

Thankyou again

[TiggerMe Ambassador in reply to Opal79]

Could you not get your GP to refer you to the same Endo who does NHS work and then it won't cost you anything I don't understand why they referred you privately? I believe if the script says 10mcg capsules then that is what they need to provide but certainly worth asking

[Opal79 in reply to TiggerMe]

Thanks will defo ask pharmacy.The endo is in a different town, county even but he does practise in NHS too. A few people on my local group see him.

However with NHS patients he is bound to only prescribe 10mcg lio max for our counties.( Also waiting list is well over a year).

Plus my GP says that the Endo dept in our city won't accept my numbers as they're normal which I believe because even when I was first dx 2 years, both FT4 and TSH were around 8, my previous GP there referred me to our endo. They said no as TSH was under 20 and to take me off levo as i didn't need any! (I'd just started on 25mcg). I contacted thyroid UK for advice who were amazing and I begged GP to titrate which she did, eventually up to 100.

Then last autumn / winter I had to fight me new GP for 2 titrations up to 125 which just made palpitations worse anyway. And she won't refer me now anyway as she seems scared that endos will think she is questioning them. She is also terrible GP though - e.g. didn't think my irregular cycles were at all connected to thyroid. All the GPS in my surgery are this bad now unfortunately. So it's all abjt pointless tbh! I'm in the midst of intense council complaint/house move due to neglect in mould for years so no energy to look elsewhere and it seems on my local group that most GPS in our city are just as bad for thyroid. I've also had some weird cortisol stuff going on, I have P.A, M.E amd fibromyalgia so all i was capable of doing in the end was going private. I'm almost housebound and my partner is now my ft carer so there's only so much I can fight. But turns out the private endo has come with his own problems anyway...so I was going to use my limited Benenden budget on him, then pay alot less than private costs for roseways prescriber.

But thankyou very much anyway

[Wua13262348 in reply to Opal79]

If you private message me with the name of your private Endocrinologist and it is the same one I am using, I can tell you what his appointment availability is likely to be for you. I made an appointment last week.

[Opal79 in reply to Wua13262348]

Thanks will pm you now

[helvella]

I argue that you simply CANNOT derive an equivalence between T4 and T3.

helvella - How much more potent is T3?

A discussion about the relative potency of T4 and T3.

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

[Opal79 in reply to helvella]

Thanks so much, I will have a good read tomorrow when hopefully my brain works abit again! Much appreciated thankyou

[Opal79 in reply to helvella]

Hi again Helvella I've just read your blog. Thanks so much for this, it makes some sense in my very foggy brain, not totally but thats just due to me being very ill and stressed atm. But basically I trust your rationale, thankyou very much! I'm quite amazed by how many people in my local thyroid group are so misinformed and at other times well informed which brings alot of confusion. This is despite the admins being very good but there's a large amount of people that do believe the ratio thing and yrll me to follow endos advice!.

My next task is to try and persuade endo to keep me on 100 or 112 levo I think as he will write to my GP to drop it to 75mcg otherwise! If he doesn't agree I'll try to ask him to at least not write to her yet while I get on a stable dose, and get my prescription from him tha i need changing due to my need for smaller spaced out doses (i have one free appt left with him via my Benenden health cover so want to utilise it as doubtful he'll change prescription withiut an appt). Then I will go to Roseways prescriber thereafter and hope they don't reduce levo lots either!

Just asking incase you can advise on the above and the following please?

I was on 112 in summer but the past 4 weeks I dropped to 100 as was getting hyper symptoms (I think I need 3 different doses according to season/heat and its been v warm where i live). In winter 100 or 112 isn't enough and raises my TSH to 2.5 rather than my happy level around 1. Also put on 3 stone of weight since last Nov when it rose.

If I stay on 100 but take the 10mcg lio will that help much? Or should I go back to 112 or even 118 when adding it? I find in winter I need 118 for TSH but makes FT4 top end range, 125 was rx but gave me worse palpitations and I suspect made me hyper. 112 usually helps Mid season but again nothing helps my FT3 or any symptoms at all.

A mod of my local group who takes T3 mono only, asked me why don't I just take mono if I'm not converting? I do feel that's quite drastic. The group don't seem to understand about the need to gradually change things either. Especially as I have MCAS and trying to move out of mould, I can't bear getting any worse even before I get better if makes sense?

So sorry for all the questions I'm so confused by how to do all this I also had low cortisol recently but passed my SST. I def don't have primary addisons but suspect secondary adrenal insufficiency but SST weren't true results, I think due to some testing inconsistencies. So I need to keep a close eye on my cortisol now, even if GP won't test I need to.

But as T3 and even levo I think can reduce cortisol further this has added a whole extra element to the confusion and panic.

I understand if you can't answer any of this and grateful for all your help so far thankyou

[helvella in reply to Opal79]

When it comes to dosing T3, I am not a good person to ask. I have no personal experience.

I HOPE someone with experience will reply. If not, nudge me again later.

[Opal79 in reply to helvella]

Ah OK thankyou