T3 or not T3

[shaws]

I was grateful for levothyroxine when first diagnosed with hypo (3 years ago), but from the fourth month new symptoms began and gradually over 17 months I had difficulty in walking/standing/bending (stiffness/joint and muscle pain), which resolved when I changed to another generic T4.   From the 8th month, I also began to have a frequent racing heart, eventually leading to sinus tachycardia (pulse over 105 p.m.).- I took betablockers. I was always feeling quite ill.

I asked the GP and the endocrinologist if I could try a brand T4 instead of the generic but wasn't allowed.

Earlier this year, it was agreed that I could trial T3 added to a reduced generic T4 with the proviso that my levels remained within range. .Within 36 hours my whole system calmed down and I hadn't felt so good in a long, long time and did not need to take betablockers.   

I had a "honeymoon period" of about six weeks, : No tachycardia: No startling awake due to heart leaping: No insomnia or broken sleep: No horrible sensations in my stomach: No night sweats: No betablockers: Not feeling so very, very ill. Tongue doesn't feel so swollen. Frequent neck pain gone.

Then began the usual palpitations/tachycardia with the ferocity I had had previously with the use of sole generic T4. I had chest pain, sore heart and frequent stabbing : pains. I had high pulse rates but the highest I recorded pulse was 144 p.m. on my monitor (I took a photo) and had to take the betablockers again. 

I  had another ECG for the chest pain and it was normal.

I know T4 stays in your system for about 7 days (and also because I was taking T3) I decided not to take T4 for seven days to see if it made any difference and lo and behold I began to feel better.  So much so I did not take T4 for a number of weeks during which time experienced a feeling of 100% NORMAL GOOD health.   I added the generic T4 again as I wanted all my levels to remain within normal range when I next had a blood test and not have T3 discontinued

However, by chance the pharmacist gave me a branded T4 and I am now on the second month with this new combination of branded T4 and T3 and have had: only 4 betablockers in the month (instead of 2 daily (60 tablets)  for Palpitations .  

I hope this continues.

I do not want generic T4 again .

I only found out about fillers/binders through Thyroid UK thyroiduk.org.uk/tuk/pages/...

I have seen a neurologist, cardiologists, dermatologist (for hair loss) and had umpteen other things excluded.

 

I saw the Thyroid Nurse yesterday who was pleased with my blood results and she will consult with the endocrinologist who made a humane decision to allow a trial of T3 with T4 for which I and my family are very grateful.

I have asked if I can continue with this regime of using branded meds, I await a reply..

It is no wonder people feel some animosity against BTA and the Royal College of Physicians for their insistence that Levothyroxine only is to be prescribed and tying GP's hands, so that you (the patient) and the GP cannot work together for a possible solution and they also state (should T3 be added) if symptoms persist it is due to outside influences such home/work. What a cheek.

PS - I also found this very informative thyroiduk.org.uk/tuk/pages/...

I am feeling very well indeed. and hope it continues..

EDIT : 21ST OCTOBER

Here is Wiki link explaining the term 'generic drug' en.wikipedia.org/wiki/Gener...

EDIT 22ND OCTOBER

Here is another link thyroid.about.com/cs/drugda...

[Hidden]

What is the difference between a 'brand T4' and a 'generic T4'? I'm glad you have found the combination of meds that works for you and hope you continue to do well.

[helvella]

In the UK a doctor is only allowed to write “levothyroxine” on your prescription. The pharmacist then supplies the appropriate tablets.

The tablets may be pre-packaged in branded packaging or might be fulfilled from a bulk pack – but either is regarded as generic. I have never seen anything but branded packages – APS, Goldshield, Teva, Actavis, Ivax, CP Pharmaceuticals, Alpharma, Wockhardt, Eltroxin, and others but I have heard of people getting them loose from a bulk pack.

The choice as to which ones you get is entirely down to the pharmacy and their suppliers. Seems to me this will usually be due to commercial decisions and will have nothing to do with which ones the patients might prefer.

(In the US they have some specific brands which can be prescribed as such – e.g. Synthroid, Levoxyl, Unithroid as well as generics. It used to be the case that doctors in the UK could prescribe Eltroxin as a brand but this appears no longer to be the case - though that brand is still available. There is also a sort of exception for liquid thyroxine of which there is but one brand.)

What advantages are there to brands? Well the main one I come up with is consistency. Once you find a brand that works you should be able to continue to receive it. We can be forced to jump from one to another without even realising that they are different.

The disadvantage seems to be that one comes to be regarded as ‘the best’ without taking any notice of how well it suits an individual. Further, having been started on one brand you are likely to be locked in to that brand forever.

Also, given the supply difficulties we are seeing these days it may be that inability to switch without referring back to the prescriber could be a real problem.

All the best

Rod

[RedApple]

HypoT2years, I wrote a blog post a while ago about this. Click the link below to read the post and comments.

Those little white pills (aka generic levothyroxine) - are they all made equal?

healthunlocked.com/thyroidu...

[RedApple]

Shaws, Thank you for posting this account of your T3 experience to date.

As a matter of interest, what 'brand' of levothyroxine are you referring to? (Presumably your T3 is generic, given there's only one UK version available for prescribing).

There is a lot of speculation about whether there is an optimum ratio of T3 to T4. It would be interesting to know how much of each you are taking.

[rosee]

If a doctor names a specific brand of medication on your prescription, the pharmacist should not substitute a generic alternative.

The following is taken from the pulse today website:

Government abandons generic substitution scheme

14 Oct 10

By Nigel Praities

The Government has decided not to proceed with proposals for automatic substitution of generic medicines by pharmacists after widespread opposition from patient groups and GPs.

The announcement - in a document released today - says the consultation on plans for pharmacists to overrule GP prescriptions for branded products and replace them with cheaper alternatives found they could pose a threat to patient safety and the economic benefits were 'inconclusive'.

[helvella]

Rosee,

The situation with levothyroxine is not like that. There simply is NO branded product - so there is no question of substitution of a brand by a generic - whether that is done by a doctor or by a pharmacist. In the eyes of those who control these matters all levothyroxine is equivalent.

(For that matter, there is no brand of T3 either. It used to be available only branded as Tertroxin but the very company that supplied that to market, Goldshield, replaced it by generic liothyronine/tri-iodothyronine.)

Rod

<b>Updated on Oct 20 2010 10:25PM:</b> You really need to think of levothyroxine being distributed under numerous packaging brands. The basic levothyroxine content is likely to be obtained from the commodity pharmaceutical market.

Whereas some other medicines are supplied under what might be considered manufacturers' brands with the main ingredient quite likely to be made in house.

[Hidden]

I have heard about the issue of different brand names before with some women claiming that different brands worked better for them. I had a period of wellness for about a month once and noted that the brand I was on at the time was 'Teva'. The next prescription I picked up was a mixture of other brand names so I requested that next time all my pills be the teva brand. One lady was very helpful, said she would order them for me. However upon collecting my script this same lady was not there and another lady was very rude to me telling me that this brand was out of stock. I had to kick up quite a fuss to get this brand and to get both my 50 mcg and 25 mcg of the same brand. I found out from another pharmacy that teva is one of the most expensive brands. Anyway after all this I was not well on them again so now I don't bother, just take what I get from the chemist.

I'm still confused about this issue.

[shaws]

I've included a link above to Wikipedia that explains the term 'generic drug'. I hope this helps

[shaws]

I have posted a link above to Wikipedia about the term 'generic drug'. I hope this helps

[shaws]

I am taking Eltroxin 37.5 per day and 12.5 T3 (bought abroad).

[shaws]

Everyone is different and in my case I feel I am sensitive to certain fillers/binders (inactive ingredients) just like someone who has an allergy to gluten or wheat. However as it is very difficult to know which inactive ingredient one is sensitive to a process of elimination must begin. The best way I found is to use a branded product. This is because branded products use the same fillers/binders each time, whereas generic drugs can use different inactive ingredients for each batch they produce. The choice between generic or branded drugs only make a difference to someone who has a sensitivity. After using various T4 products, I eventually found Eltroxin suited me best. Unfortunately, it is a trial and error process for each and every one of us. I have found this book amazon.co.uk/Your-Thyroid-H... by Barry Durrant Peatfield extremely helpful on my particular road to recovery. Perhaps you will find it useful too. I do hope you find some relief to your symptons. I do know how demoralising it can be trying to find a road back to health.

[Chippysue]

Having a good relationship with your Pharmacist is of paramount importance as if you ask them for a particular brand then they will honour it in most cases. A Tesco Pharmacist told me that they do.

I am costly to the NHS as I have 200mcgs of purified levothyroxine which is very expensive as it has to be specially ordered.

I just felt worse when I took normal levothyroxine, my Pharmacist supplied different brands but they were all the same. Eltroxin is the superior brand, or so I have been told.

We are all so different, I am really pleased that you are feeling well!

[helvella]

Suze,

I can assure you that Goldshield Levothyroxine is identical to Eltroxin, at least at the 25mcg dose. Which is not surprising as Eltroxin 'brand' is owned by Goldshield and both are actually made by Custom Pharmaceuticals. And both have FW41 impressed on one side.

All the best

Rod

[shaws]

I have used 25mcg levothyroxine by Goldshield and it did not agree with me at all and switched to CP Pharmaceuticals 25mcg. Thankfully, Eltroxin 25mcg with T3 has worked wonders. Hopefully, it will continue.

[helvella]

Levothyroxine marketed as Wockhardt and CP Pharmaceuticals are also both made by Custom Pharmaceuticals. And both have the same ingredients as each other. And are different to the Eltroxin/Goldshield 25mcg. (And Goldshield 50 & 100 are different again.)

Nothing like making it easy.

Rod