recent labs and tirosint issues

[Ajva]

I have attached my bloods (managed to get t3 tested as well. I was on 125mcg of tirosint (levo) and 5mcg of compounded t3.

I found out last week that you can not get tirosint anywhere in England until July as there are issues with manufacture in the USA.

I was just about to run out of meds, as I ordered tirio a month prior to running out to be told they’re out of stock. So in the meanwhile I have had to go back on armour and 75mcg of levo. just to tide me over until I have an appointment in a few weeks to discuss new medications.

as you can see my t4 is now slightly over range, t3 is over. I was feeling very unwell.

now my dilemma is to either stay on Armour and levo of swap to compounded t4 and t3 seperatly. Also, I have included cortisol on there, is that level ok for 8:30am?

I am seeing endo tomorrow morning through the nhs. Not expecting big things…. But any advice would be appreciated. I think either way I needed to got back on 100mcg t4. My problem on 100mcg t4 and 5mcg t3 is my tsh was 5, t4 low at 13 and t3 sits at around 5.

[Lalatoot]

Ajva why if you were on 125mcg tirosint would you reduce to 100mcg t4. If you are going to swap why not 125mcg t4 and 5mcg T3?

[Ajva in reply to Lalatoot]

Just to confirm you have looked at my bloods? As I am over range slightly on t4 and t3. These bloods were taken whilst on 125mcg and 5mcg t3. So I was guessing from my bloods I needed to decrease medication?

Also I can’t get tirisint until July so I need to swap now to a compounded levo.

[Lalatoot in reply to Ajva]

Yes but "My problem on 100mcg t4 and 5mcg t3 is my tsh was 5, t4 low at 13 and t3 sits at around 5." which suggests the need for an increase in T4.

[Imaaan]

You can alternate the t4 doses by 100 and 125. I did that a few yrs. Another option is 4 or 5 days of 100mcg and 125 the other days.

[Ajva]

the only problem is with getting it compounded I will have to have a set mcg. So I would need to work it based on that. I am terrible at trying to do the math for doses. But if I skipped 1 125mcg dose a week, would that help?

[Imaaan in reply to Ajva]

Your results is on 125mcg taken for 7 days which totals 875 mcg a week .

875 mcg a week puts your ft3 and ft4 slightly over and 700 mcg doesn't make you feel the best. So your sweet spot is somewhere in between.

Options to take:

**125 mcg taken 6 days plus 100mcg on 7th day totals 850 mcg a week

***125 mcg taken 5 days plus 100 taken 2 days totals 825mcg a week.

***125 mcg taken 4 days plus 100mcg taken 3 days totals 800 mcg a week

***125 mcg taken 6 days and 100mcg taken on the 7th day totals 750 a week

**** Even if its compounded you can ask them to give you 2 different doses. I used to take 75 mcg a day and alternated with 88 mcg .

****Finding the sweet spot is through trial and error but with your results and your symptoms, I'd be more inclined to first try 4 days of 125 and 3 days of 100mcg which would be 800mcg in a week or 115mcg compounded and taken 7 days totals 805mcg a week.

[Imaaan in reply to Ajva]

What do you mean skip 125? Like not take a dose that day? If so, I dont think that would be wise since your body needs hormones everday.

[Ajva]

I see I didn’t realise this. I see what you mean. That is something I could do get the pharmacy to compound 2 different doses. The only issue is the amount it costs. At the moment I am currently on Armour and 75mcg of tiro (as I have left over boxes of each) until I speak with Dr.

I wanted to get off of armour (was on it for years) only due to the doses not being flexible and the fact it makes my HR high when I already have PoTs. I will review in a few weeks.

Thank you for your help on my post, it has been very helpful

[Imaaan in reply to Ajva]

Yes its costly to have 2 different doses. I later edited and added the option of taking 115mcg everday which would total 805 mcg a week .

All the best and I hope you find your perfect dose.

[Ajva in reply to Imaaan]

yes that’s actually a really good idea, I didn’t think of that. I will probably find that ok as tirisont is obviously high obsorbing and I am guessing the compounded will not absorb as well.

[Imaaan in reply to Ajva]

You misunderstood me. I meant to say ask the compounding pharmacist to give you that specific dosage. The beauty of getting something compounded is that they can tailor your dosage. I've requested odd dosages before for my t3.

I doubt Tirosint comes in the dosage I suggested to you. I thought you were on regular compounded t4 and not tirosint. I completely missed your title

[helvella in reply to Imaaan]

Tirosint comes in a large range of dosages including 100, 112, 125 and 137 micrograms.

Tirosint is manufactured by a Swiss company - IBSA - even the product in the USA and Canada.

Manufactured for IBSA Pharma Inc. by:

IBSA Institut Biochimique SA, 6912 Lugano, Switzerland

dailymed.nlm.nih.gov/dailym...

The actual factory would appear to be:

The Manno plant in the Canton of Ticino, Switzerland

ibsagroup.com/ibsa-group/pr...

I don't know what is meant about manufacturing issues. But as it is not manufactured there, it seems a bit odd. Of course, there could be problems - but should be in Switzerland!

Also, seems mad that the UK gets Tirosint from the USA rather than one of the European countries in which it is available - even directly from Switzerland.

[Imaaan in reply to helvella]

There was a time that I was interested in Tirosint so I knew it came in a few dosages but didnt know the exact dosages. Thanks for providing the info on it.

Very bizarre that Europe gets Tirosint from the US. I cant imagine it being cost effective.

[Ajva in reply to Imaaan]

you won’t find those doses over here. I needed to go on 88mg and had to go on 100mcg as they do not stock each dose in the uk. So very limited with dosages unfortunately

[Ajva in reply to helvella]

for some reason the pharmacies in the uk only stock 25, 50 and 100s. It costs me a fortune to buy but it does work for me. I am not sure what problems they are having but not one pharmacy in the uk can get hold of it until July. It is very frustrating. I may have it wrong that it is imported by the USA but I am sure that’s what the pharmacy said to me.

[Litatamon in reply to helvella]

I have asked about five pharmacies about Tirosint (Canada) & they haven't a clue what I am talking about, and claim it is not available here. Imaaan , you were successful in finding it?

[helvella in reply to Litatamon]

Maybe they would recognise it by its Canadian name?

PRODUCT MONOGRAPH

INCLUDING PATIENT MEDICATION INFORMATION

TIROCAP™

Levothyroxine Sodium capsule

Capsules, 13 mcg, 25 mcg, 50 mcg, 75 mcg, 88 mcg, 100 mcg, 112 mcg, 125 mcg,, 137 mcg, 150 mcg, 175 mcg and 200 mcg, oral

pdf.hres.ca/dpd_pm/00061920...

[Litatamon in reply to helvella]

Thank you helvella.

[helvella in reply to Litatamon]

Also:

Try this government website - you probably have to enter a new search for "tirocap".

health-products.canada.ca/d...

[ttreefrog in reply to Litatamon]

Fellow Canadian (BC) interested in this as well. Adding, for what it's worth,....In Oct of last year I spoke with a fellow from a Canadian company called Progress Therapuetics. He said they were the ones trying to bring Tirocap into Canada and that IBSA (Tirocap manufacturer) contacted him a few week prior and told him they were not going to pursue bringing it to Canada and they didn't provide any explanation as to why. If memory serves, it has received Health Canada approval and then goes to the provincial level from there - I'm still not clear on what the status is in BC as no one got back to me. I also left an email message for IBSA and have not heard anything back there either. Then I lose energy, hope and brain power and haven't gotten back to any of it.

[Litatamon in reply to ttreefrog]

Thank you so much treefrog, very helpful. And thank you Imaaan as well. It is so frustrating to read all the choices, lactose-free etc, people have in other countries and have such abysmal choices here. And then hands tied with importing anything. The things you learn about your own country in these moments.

I am now remembering that when I was researching I found a post by a Canadian who had given up finding Tirosint & found a compounding pharmacy that would do it.

Wonderful, but how the average person affords these prices monthly is beyond me.

[ttreefrog in reply to Litatamon]

Echoing your frustration! Compounding is very expensive.

[Imaaan in reply to Litatamon]

I spoke with my pharmacist today and they told me that Tirocap was showing up in the system but unfortunately an order couldn't be place. They also mentioned that it was showing that there was a shortage in 2020 or 2021 I cant recall.

[Litatamon in reply to Imaaan]

Thank you Imaaan. Appreciate it.

[Imaaan in reply to Litatamon]

Though I was interested in Tirosint and researched it a bit, I never pursued it. Instead I decided on having my med compounded. That was a few yrs ago.

I'm friendly with my pharmacist so I'll ask them if they have it in stock. I know that hes told me in the past that they can order meds in. They dont typically stock my Erfa med so I have to call ahead for a refill for them to ship it in.

[milkwoman]

It has been reported that Tirosint is better absorbed than other brands/types of levothyroxine (T4). Therefore, when you switch to a different brand, you generally need to increase the dose to achieve the same result that you felt on Tirosint.

So it’s not surprising that when you were switched to a different brand AND given a lower dosage, your blood results are showing you are now under medicated and feeling unwell.

[Hidden]

blood cortisol levels are not useful, saliva is what is available and usable by the body.

[Happytiredbunny]

cortisol should be over 400 at that time of day! Yours is pretty low, hope they check your ACTH and do some further investigations!

[Ajva in reply to Happytiredbunny]

thank you I thought this was the case. I saw endo yesterday and forgot to show him results. Although, I have had tests in past he’s going to repeat urine 24hours test and a few other bloods.