Response I received from Endos Nurse

[Batty1]

I have always been on Synthyroid non-generic since my thyroidectomy in 2016 and my endo ordered me the Generic version and Im reluctant to take for fear of having issues again.

Would this response irritate you?

I sent another email saying nope I want what I have always been taking, no substitute. These people act like they pay out of pocket for my healthcare.

Hello Ms. D,

Dr. Ball did not order the wrong medication. He ordered Levothyroxine (Synthroid). There are many generic brands of levothyroxine. You will need to discusses this with your pharmacy. Unfortunately, we have no control over this.Technically, all generic brands should be the same. We recommend if a new generic is started, please make a note on your calendar and see how your feel in 4 weeks. Should you not feel as well, we can recheck labs to see if the new generic is keeping you in the proper range or if an adjustment is needed. The same applies to liothyronine (Cytomel). Both of the medications were ordered correctly by Dr. Ball.

Best,

Kathy

[humanbean]

Technically, all generic brands should be the same.

This is not necessarily true. The active ingredient must be the same i.e. Synthroid and the generics must all contain Levothyroxine as the active ingredient, but the other ingredients in the pill can vary. You might find this website of use in determining the differences between brands of Levo.

dailymed.nlm.nih.gov/dailymed/

The belief of patients in the US that Synthroid is somehow "real" Levothyroxine and is superior to other brands of Levo is not an idea that ever crops up in the UK.

Prescription drugs and hormones aren't advertised here, so no brand can claim to be better than any other. I think that Synthroid has the largest advertising budget of any brand of Levo sold in the US.

Synthroid has a bit of a dodgy history - see this old article from the NY Times :

nytimes.com/2001/07/24/scie...

[Batty1 in reply to humanbean]

My biggest concern is switching after 4 yrs of being on Synthyroid and actually their isn’t a reason to switch me (it was not discussed) and I haven’t voiced complaints about Synthyroid and Im worried about agitating my current PSA flare with 2 new drugs ( generic of both cytomel and Synthyroid) .

I never seen a Synthyroid advertisements on my TV or any thyroid meds for that matter.... I got my drugs from military base maybe thats all they prescribe.... who knows.

Do you think I should give it a try? The ingredients between the two according to pharmacist are the same but boy do they look completely different in size and color (White vs. Cream color) I have issues with the colored Synthyroid tablets I have actually ended up in the Emergency room from sever hives and burning skin so this and my PSA is why Im worried about switching to a new script when actually is no reason they just need to do is put on the script DO NOT SUBSTITUTE and I would have no issues .... Im annoyed by the mom waging her finger at me and telling the person who pays her bills to suck it up.... I pay out of pocket for this entire poop show!

[humanbean in reply to Batty1]

Has the wording on your prescription actually changed? If you've always had Synthroid in the past do you know why you are getting a different brand of Levo now?

I don't know how people get prescriptions in the US. Are they always sent directly to a pharmacy? Are you given a piece of paper you can take to any pharmacy?

I think my lack of knowledge of the whole US method of providing and filling prescriptions means I should just bow out of the conversation - I'm just getting confused.

[Batty1 in reply to humanbean]

No your fine .... Doctors in the US usually call in your prescription or give you a paper script my endo called in my script to a pharmacy and ordered the generic version of Synthyroid instead of name brand Synthyroid which I have been on for the for past 4 yrs and NO him and I never discussed going generic.

Do you think I should give the generic a try?

[humanbean in reply to Batty1]

That depends. If you are at risk of running out of your preferred Levo and have no chance of getting what you want then I would say yes, try the new kind.

But in your shoes I would be angry too. Your doctor is moving the goalposts without discussing it with you and that really isn't on, in my opinion, and nor is it good healthcare, particularly if you are paying for it out of pocket!

[Batty1 in reply to humanbean]

I might give the new pills a try and leave my remaining scrip as is just in case these pills kill me I have something to fall back on...

It’s annoying that I pay this Endo $400.00 and he still doesn’t listen and does what he wants just like the rest of them ... My biggest problem is this cancer mess forces me to deal with these endos or I would bolt.

[Batty1 in reply to humanbean]

Humanbean, I went to that website you provided for medication look up... what should I be seeing?

[humanbean in reply to Batty1]

You can enter "Synthroid" in the search box and it helps you to identify what your prescription box should look like, and also gives you all the official info on it, including all the ingredients.

You can do a new search for the levothyroxine made by the company that you've been given by the pharmacist. You can compare ingredients between the two and if you don't tolerate the new Levo you can possibly identify the ingredient that might be causing you problems.

Suppose you are given a type of Levo which contains mannitol and you don't do well on it you can try and find a version of Levo that doesn't include mannitol and insist on getting that in future. Other common ingredients that causes problems are acacia and various colours.

For example - This is Synthroid - levothyroxine sodium tablet packaging and other info :

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

[Barrett582]

If you are in the US and you are paying out of pocket, you can ask the pharmacist for Synthroid. You can request the manufacturer if your prescription is written for Levothyroxine. It is not possible if you are dealing with mail order.

[Batty1 in reply to Barrett582]

I wish it was that easy ... still need a doctors script even if you pay out of pocket.

[Barrett582 in reply to Batty1]

If the script is written for Levothyroxine and not for any specific brand, you can request any brand. If your prescription is for a specific brand then that is what you can get. So you can talk to the pharmacist and get Synthroid as long as the doctor didn’t specify the brand name. My husband is a retired pharmacist and I have quizzed him. Good luck.

[Batty1 in reply to Barrett582]

He specifically ordered generic Synthyroid

[Barrett582 in reply to Batty1]

Have you had brand Synthroid filled at this pharmacy before? Is this the pharmacy that you have used for 4 years? The pharmacist should have a record of your Synthroid and should have counseled you since your medication changed. You can go back, talk to the pharmacist, and see if they will fill the prescription for brand. Unfortunately they can’t take the generic back. GRRR... all Endos know that you should never change your brand of Levo. Four weeks of misery in your life is a long time. Good luck.

[Batty1 in reply to Barrett582]

Its an online pharmacy called Express Script and I currently use this pharmacy for my immunosuppressive drugs and they are also attached to my military pharmacy so they can actually see every prescription I had filled over the past 4 years.

[Batty1 in reply to Barrett582]

They are putting in a new script for Synthyroid.... I will wait and see

[Barrett582 in reply to Batty1]

That is great news. Unless you get the brand Synthroid, they will send you whatever generic they have on the shelf. It is possible to receive a different generic each time. I am allergic to acacia which is an excipient in some Levo. I called and asked if they could accommodate my allergy. I was told “no” that they would send whatever they had at the time and that the manufacturer could be different every time. Brand is best through mail order. If you tell your Endo, perhaps it will be easier to get Synthroid.

[Batty1 in reply to Barrett582]

Im allergic to the Acaia too that’s what sent me to the ER with hives covering every inch of my body...... it would be much better for makers to use no dyes or weird plant stuff and just make pills indifferent shapes to identify them.

Im holding my breath to see if I get the original Synthyroid ...

[Batty1]

Hi lora7again.... I have read this article does this mean Im doomed with a leaser dose of T4?

[Batty1]

I contacted the pharmacist and of course they say it’s exactly the same. Im just going to take it and see if it affects me ... its just annoying.

[Shield-Maiden in reply to Batty1]

Hi Batty1,

I used to have the same problem (when I lived in North America)...we used a Pharmacy in a well-known big box store ---mart; and between approx 2016 to 2018 (when we moved countries) they would continually fill prescriptions with Generic instead of Brand medicines, unless the doctor had written 'No Subs' on the script.

Obviously, generic is cheaper, and, as I was once told, not always the same...a doctor friend told me, that a generic drug only has to contain 20% of the active drug, to be classed as comparable.

I was on Synthroid and Cytomel, and always received the brand name for these. Perhaps your GP could write you the same script, and add the words, 'No Subs' perhaps it might be worth asking (mine was always pretty good).

Good luck

[Batty1 in reply to Shield-Maiden]

I just got a email from his nurse they submitted a new script for my original Synthyroid (not generic) Im holding my breath... As a university Endo I expected more common sense as he flip flopped about everything we talk about on my conference call with him.

[Shield-Maiden in reply to Batty1]

Make a fuss, do not settle for the generic...you need the real deal, it's your health. Sounds promising now, well done

[helvella in reply to Shield-Maiden]

Obviously, generic is cheaper, and, as I was once told, not always the same...a doctor friend told me, that a generic drug only has to contain 20% of the active drug, to be classed as comparable.

That simply cannot be the case. In the USA, levothyroxine tablets must achieve 95 to 105% potency across their entire shelf life (up to expiry date). It is also mandated that the manufacturer targets 100%. (Some companies used to target something like 105% in the factory with the intention that they drop from this higher number to 100% by the time they got to pharmacies. Trouble was, they sometimes remained over 100%. And, as this was inconsistent with only some companies doing it, it made it impossible to safely switch makes.)

Often, it is said that any medicine made by another company when a patent expires is a generic. Trouble in applying this to levothyroxine starts with the fact that it was never patented in the USA (nor the UK) so far as I have been able to determine.

Further, that every USA manufacturer had to apply for approval because so many levothyroxine makers failed to meet acceptable standards. Synthroid specifically had to pull its socks up. So what you get as genuine Synthroid today is at least a little different to what they sold for over forty years. Synthroid couldn't even manage to be the first to get approved. Unithroid is the official first approved product against which others are compared.

[Batty1 in reply to helvella]

I never heard if unithroid.

[helvella in reply to Batty1]

This is information about it from DailyMed:

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

I think the product is being transferred to a new company - with no intentional changes - hence that is listed as a new medicine.

Most levothyroxine products in the USA are listed here:

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

[Shield-Maiden in reply to helvella]

Thank you for your post. I didn't live in the USA, and, the doctor was Canadian.

I never did try generic Thyroid meds, but I do know that my Tumor medication is best in the brand form, as the generic gives me awful side effects (so, to me, is cheaper, simply because it is not as good, ingredient-wise). To me, whenever I was given generic, it never worked as well as the names brand.

I was only going from my experience, and, what a doctor told me.

Insurance companies prefer generic, because it costs them less.

[helvella in reply to Shield-Maiden]

I think that for medicines, the Canada and USA standards are quite similar.

I am absolutely ready to believe that generic versions of some medicines act very differently on individuals.

The cost of a generic is not always lower. In the UK, the official prices of all levothyroxine tablets are usually the same. Occasionally we have seen branded products less expensive possibly because there is a price control mechanism on branded products but not, in general, on generics.

[Batty1 in reply to helvella]

Hellvella, that drug look up site you gave me ... I typed the NPC numbers for my scripts both the T4 and T3 meds are made in Germany... so why can’t you guys and gals get T3 meds I would think it would be cheaper for you.

[helvella in reply to Batty1]

I know that at least two listed T3 medicines are manufactured in Germany. By Peptido GmbH.

peptido.de/en/what-we-can-do

But there is a huge difference between a company producing a medicine under a contract manufacturing arrangement and a medicine being supplied to the market - marketing, distribution and support.

We are also well aware that Thybon Henning is T3 medicine available at a very acceptable price in Germany. And Sanofi Cynomel is even less expensive and available in France.

This is why it is so utterly frustrating that the purchasing arrangements in the UK do not appear capable of using what we regard as simple sense.

Part of the issue is that, in general, it is up to pharmaceutical companies to apply to our licensing authority (the MHRA). If the German and French products are not licensed, they will not be available - in general. (It is possible for small quantities to be supplied to individuals but even that is difficult.)

Many who care have put a lot of effort into trying get T3 prices investigate have hit brick walls.

By the way, which T4 is manufactured in Germany?

[Batty1 in reply to helvella]

Absolutely amazing !

[Shield-Maiden in reply to helvella]

That's good for people in the UK. In Canada the generic versions are mostly cheaper, hence the push to fill generic on most prescriptions, unless the script states otherwise; when we moved from Canada, it was getting a little silly. To me, if a doctor writes a certain brand of medication, then that is what you should receive. It is not for a pharmacy tech to call your doctor, asking why they should not fill with a generic medication (this happened to me once). Pharmaceuticals are very expensive in Canada and America, and insurance is needed.

Thank you helvella - have a lovely weekend

[Batty1]

You mean the generic? Since I pay for the script doubtful, I think he doesn’t think. For example on my video chat he said I will send you blood work to retest in 8 weeks (watched him type it up) then he said I will put you in for a follow-up in January and as soon as you get that appointment day schedule for another ultrasound to see how your cancer in your lymph nodes are progressing .... Got the Follow-up appointment for August so no US until August and no lab paperwork.

Im one of those people that gets very irritated with people who don’t do what they say they are going to do and Im starting to think this guy is a airhead... which worries me!

[Shield-Maiden in reply to Batty1]

Can't you change doctor's ?

[Batty1 in reply to Shield-Maiden]

Yes I can but with corona its not easy and my husband calls me a moaner for always being unhappy with my Endos.

[Shield-Maiden in reply to Batty1]

You're not moaning at all. I don't think (some) men understand how important Endocrine issues are.

When I first realised my fatigue etc was Thyroid related, the first Endo I saw was lovely, but he moved hospitals; after waiting ages, the second was a very unpleasant, and she threatened to take me off of all of my Thyroid medication, if I didn't reduce my medication (I was Hypo) so I asked my GP to refer me to another Endo. Again, after a long wait, I saw an Endo who I saw twice (5 minute appointments) and the last time I saw her was 2 weeks after my Dad had died (an unexpected and rather horrific way to die) she told me to "get over it." Needless to say, I didn't bother seeing her again. Several months later, we emigrated again. My new GP (as usual) does not understand Endocrine illness, and has told me to reduce my T4, and has referred me to an Endo...thanks to this wonderful forum, and because I feel better, I have not, and will not be going to, reduce my T4.

I would do some online research, and if possible, read testimonials, and ask your GP to refer you to an Endo of your choice.

Good luck ♡