Switching to Erfa

[zaccygirl]

Hi, I would be very thankful for a little advice. I had a total thyroidectomy in 2010 due to thyroid cancer. Been very unwell ever since - all the usual unpleasant symptoms. Told by my oncologist that I am intolerant to Levothyroxine but he said there is nothing else that I could take. Finally found a private Doctor and am about to start taking Erfa. I am petrified to make the change but feel I have no choice as I feel so unwell on current meds. I take 50mg of T4 and 10mg of T3 which I can just about manage. Any advice on making the changeover please. So badly need the NDT to work. Thanks for reading this post.

[Clutter]

Zaccygirl, do you have recent thyroid results with the lab ref ranges you can post? I suspect you are very undermedicated.

You can switch directly to one grain of Erfa (60 or 65mg). Split the tablet into 2 doses 6-12 hours apart. Increase in half grain increments every two weeks until you are on 2 grains and hold for 4-6 weeks and have a thyroid blood test to check levels before increasing further.

[zaccygirl in reply to Clutter]

Hi, thanks for your reply. I have been on just about every amount and combination of T4 and T3 and 50mg T4 and 10mg T3 are just about all I can tolerate. Still feel so unwell and tired all the time, I suspect due to the low dose. Just hoping NDT can give me a little of my life back. Its a scary time but really need to do something to feel better. My Nhs GP, Endo and Oncologist won't even discuss NDT but I feel I must a least give it a go. Wish me luck and thank you for the advice. I'll let you know how it goes.

[Clutter in reply to zaccygirl]

Zaccygirl, low ferritin is often why patients can't tolerate dose increases and higher doses of thyroid hormone.

You should ask your GP to test ferritin, vitamin D, B12 and folate. Low/deficient levels are common in hypothyroid patients and can cause musculoskeletal pain, fatigue and low mood similar to hypothyroid symptoms.

[zaccygirl in reply to Clutter]

Thank you. I will ask. My GP has no idea at all. When I ask anything about thyroid problems he just looks at me with a very bored look on his face!! I feel too worn out to argue with them most of the time. I will try though. Thank you for you reply.

[shaws Administrator in reply to zaccygirl]

You maybe intolerant altogether to levothyroxine so you may do very well on NDT as it is more conducive to our bodies than synthetic for many people.

Take note of your pulse/temp several times a day as well until you reach your optimum (feel quite well) on NDT. I hope you feel better very soon.

[Jacqueline6868]

Try the spire hospital Bristol Dr J. Good luck!

[Glynisrose]

Personally I tried Erfa and the fillers were too much!! I reacted badly and changed to Armour which has NO maize starch in it. You may be sensitive to the fillers in levo as well.

[debjs]

I had TT in 2011 and like you have been very unwell since. I cannot tolerate Levothyroxine at all and have tried T3 several times with major problems. I now take Armour (prescribed by my GP and tolerated by the endocrinologist though he will not prescribe it). Although I am still a way from being well and it took me over a year to reach a reasonable dose I am very much better than I was and can at least function though am still not well enough to work.

I found keeping a symptom diary complete with dose and blood test results helped, particularly as my TSH became very supressed on quite a low dose but then stayed there regardless of subsequent dose increases. I could never tolerate half grain dose increases and had to increase in quarter grain increments. I also found every increase made me nauseated and dizzy with a headache from days 3-7 after an increase but settled after that until the next dose increase. It also made me itchy for a few weeks to start with but that also settled. I found the books 'Stop the thyroid Madness' and a book on hypothyroidism by Dr Mark Starr helpful.

Don't be too despondent - there were many times when I had to reduce my dose back down for a few weeks then try to increase again which was frustrating as I was just so desperate to start improving. I realise I am fortunate to have a very helpful and supportive GP. Good luck, I really hope it helps you.

[zaccygirl in reply to debjs]

Thank you so much for the advice. Its so difficult to know what to do for the best, so it is lovely to talk to people that have been or are going through the same thing. Seems like its never ending at the moment, but just hope and pray that NDT will be the answer or at least help towards some improvement. I wish you well and hope you continue to make progress.

[zaccygirl]

Thank you all for your replies. Feeling stronger just knowing I'm not alone in this struggle. Take care.

[Hidden]

Do post your last blood test here, with ranges. If your GP didn't give them to you, ask for them - you are entitled to them. Or your private doc may have done a panel? It is important to know where you're starting from before you start taking Erfa (although it is true that the best test of how you're doing on meds is how you're feeling). You won't want to hear this, but it is possible that you will feel worse before you feel better. Any thyroid (hormone) meds take time to work. It may be several months before you feel the full benefit. And you may find even then that you need to tweak your meds from time to time to stay in your 'sweet spot' with your meds.

What has your private doc said about how you should take the medicine he has prescribed? Clutter's advice is good, but it's odd the doc should have given you no instructions. You will need a blood test (from GP or private doc, or even a private lab) in about 6 weeks to see how things are going.

Do not be scared. For a lot of us thyroidees (particularly those who find their way here) we need to think - and step - outside the UK's restrictive medical box in order to feel well. It may be a bit trial and error - but you will get there.

Absolutely get all your vitamins and minerals in good fettle, preferably before you start - and attend to you Adrenal glands too. With all the stress your body has been under they are almost certainly exhausted. Cortisol tests are notoriously unreliable so just try a good quality supplement for your Adrenals before you start on the Erfa.

Good luck!

[zaccygirl in reply to Hidden]

Thank you. Everyone's been so kind and helpful. My Doctor has given me much the same advice concerning how to take the NDT and wants a blood test done in 6 weeks. He hasn't mentioned anything about adrenals or vitamins though, or having a blood test done first, so I have emailed him and put all the info I have received today to him. Awaiting a reply. I will let you know the outcome. Thanks again.

[Salsa2014]

I think it's disgusting and negligent that your Oncologist said there was nothing you could try apart from levo and T3. They are allowed to prescribe you NDT-it is not banned- and should be helping you restore your health after telling you no doubt that you needed your whole thyroid removed for cancer. You have been through enough without having to battle to be treated properly. What if it was their wife, their daughter, them? !

There is no point removing your risk of cancer just to condemn you to a miserable existance afterwards. It seems so many people are just left suffering after thyroidectomy. It's appalling. Good luck on the NDT. I wish you the best of health. (I have had half my thyroid removed for suspected cancer, but it wasn't. )

[zaccygirl in reply to Salsa2014]

Thank you so much. Thank goodness you didn't have cancer. That must have been such a relief for you. But nevertheless, you still ended up with half a thyroid. How do you cope with that? Ok I hope. Up until today I have felt very alone with this thyroid problem. I have a wonderful family who support me all the way. But unless you are or have actually been in this situation it's very difficult to understand that it's with you 24 hours a day. Trying to live a life when constantly suffering from brain fog, confusion, shaking, anxiety and much more ( when pre TT you had none of these at all) it's such a relief to finally chat to some likeminded people, who really do understand.

My Doctors give the impression that they have removed and cured the cancer and that should be enough. Well, of course I shall be eternally grateful for that, but as you so rightly said it would be nice if they were just a little bit more understanding afterwards if you don't fit into there T3 and T4 plan. It has taken my Endo nearly 5 years to even admit that I am not the only one of his patients that are intolerant to Levothyroxine! Well, once again thank you for your kind comments and I wish you well. Take care.

[Salsa2014]

I understand what you mean-no cancer is good but this cancer also means you lose a vital organ and have quality of life changes and possible reduced health afterwards and the medical profession seem to shrug this off-how convenient! There is no point extending someones life if it going to be miserable afterwards-I personally would rather have ten good years rather than 30 miserable ones! They use NDT widely in the USA-people often report superior results. It is negligent in my opinion that you are going it alone and they are not supporting you in this. Levo doesn't work for you and you have no thyroid for goodness sake! Do they just expect you to accept your lot and throw your precious life down the drain?! Something is very wrong. There are over 300 drugs to treat diabetes and even 3 for hiccups! but only one for thyroid, which they know doesn't work for a significant amount of people. It is a scandal and we should all be getting angry with the medical profession about this-there are no excuses-its peoples lives we are talking about. I personally think that petitions etc don't go far enough-the only thing that will work is some kind of collective mass demonstration that will receive media attention. We can talk on boards like this until the cows come home but it's the medical profession we should be talking to. Nothing will change in our lifetime unless all thyroid patients collectively draw attention to the issue-using the media would be a way forward. Shame on them for leaving you so alone on this. They wrongly mis-diagnosed me with cancer and tried to remove my whole thyroid without doing adequate testing. I am managing with half at the moment, but am not the same-they have left me v depressed and traumatised and I was healthy happy and very physically fit before. I am worrying about my health deteriorating over the years and having to battle to get thyroxine. They have robbed me of my peace of mind. I am still in 'range' at the moment but have lower FT4 and FT3 than before surgery-not even mid range for both, so the so called normal results are not normal for me. I have got solicitors involved and am trying to sue for medical negligence. I think it is a travesty how we are treated, a very sexist issue as we are mainly women and one of the biggest scandals of this century. I for one, am not prepared to go down without a fight but I also know I can't do it alone. Sorry for the rant but that's how strongly I feel. Keep us informed how you do on erfa. I hope you really improve (and also show them how much better you are) Good luck!

[Salsa2014]

P.s im sorry my reply turned into a massive rant and I didn't mean to use you as a sounding board-I am just so sad and so angry. I am sorry you're suffering such horrible symptoms, you're right in that other people, however well meaning, don't really understand how isolating and frightening thyroid problems can be. I genuinely really hope you get much much better and get your life back. They are trialing a new drug in America called 'thyromax' which is based on slow release T3 and is looking hopeful. The pioneer of tge drug also suffers thyroid problems. Lets just hope it is not blocked by big pharma who will be worried about their levo profits.

[zaccygirl]

Hi Salsa2014.

I think you are quite right to have a rant. I will keep in touch with you and let you know my progress with Erfa.

Stay healthy and take care.

[mrmoo in reply to zaccygirl]

Hi Salsa, How are you doing on ERFA?

[McPammy]

Hi. I was wondering how you did or doing on Erfa. I have had terrible issues with Levothyroxine recently. My private Endo has just prescribed me Erfa.

Many thanks

Pam