Not coping too well on Erfa...: Edyta started to... - Thyroid UK

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Not coping too well on Erfa...


Edyta started to take Erfa Thyroid just over a week ago (not long I know), We were supplied with ½ grain tablets as they do not manufacture ¼ grain, we cut the ½ grain into four pieces and for the first two days Edyta took (approximately) 1/8 grain. She had no adverse reactions but felt no effect whatsoever, after two days she decided to try taking ¼ grain, again, no negative reactions but only a minute, barely noticeable increase in energy. she decided three days ago to take a full ½ grain tablet; on Tuesday she started to feel a slightly more noticeable increase in energy and managed to take a short walk but this took most of the energy she had. She is also experiencing no improvement in her cognition. She is trying to study but is finding it very difficult to concentrate and is not retaining any information at all, after reading a couple of pages of her textbook and only four hours after taking Erfa she started to feel very drowsy and after another hour or so felt so sleepy she had to lie down and take a nap (something she never does) so just five or six hours after Erfa she could not stay awake.

Edyta took another ½ grain yesterday and did not react very well, She was physically jittery, almost manic, panicky and very depressed. She did not experience the same severe drowsiness as she did on Tuesday but the feeling of anxiety is much stronger and didn't leave her all day. After reading that the anti-depressant she takes (Mianserin) causes terrible problems for Hypothyroid sufferers she cut her dosage from 80mg to 70mg with a hope of coming off Mianserin altogether over the next few months. Today's 1/2 grain tablet caused the same sort of reaction, anxiety, depression and an overwhelming feeling of hopelessness. Her body temperature has dropped to 35.4. She doesn't know if she is under-medicated or over-medicated, if her body can't handle the medication or if the problems are stemming from the 10mg drop in her anti-depressant dosage.

26 Replies

Hi Ton, This is scary for you both.Thyroid treatment is usually started very low like this and then re tested, TSH, T4 and Free T3 every 6 weeks and slowly increased according to how one is and blood results. it usually takes a year to have optimum treatment and feel better. If it was me I would continue trying taking the prescribed dose every other day and see.Then gradually go to the prescribed dose. Split into twice a day should be sufficient.Did she have all three thyroid tests before treatment ,as that is essential.? You can DIY on line ( ask if you want more info). usually an allergic reaction is more severe, I had auto immune hepatitis from a drug I had been on for years.I think the problem may be the anti depressant. often too people are misdiagnosed with depression when they have thyroid disease, often only the tSh is tested which is useless. I would also e mail a letter to both consultants treating Edyta via their secretaries, do not leave a message as it is unlikely to be passed on correctly!Try not to worry I am sure all will improve in time.That is a really tiny dose.

Best wishes to you both,Jackie

Tony63 in reply to Jackie

Thank you Jackie.

Sorry for a simplistic question, but how do the graim measurements used relate to mg's - I take 50 mg levothyroxine but i can't compare it to the dosages given above !

PinkNinja in reply to rosieno1

Hi. Erfa is a natural dessicated pig thyroid. 1 grain contains approximately 38mcg T4 (same hormone as levothyroxine) and 9mcg T3 (the active hormone - not present in levothyroxine).

helvellaAdministrator in reply to rosieno1

PS - I think you take 50 micrograms of levothyroxine. (Not - as you posted - 50 milligrams.)

rosieno1 in reply to helvella

you're right there!

Hi Tony. Perhaps Edysia needs to go back to the previous dose for a few more days. I know it's not ideal, but she's probably experiencing this reaction due to low cortisol levels. This is very common in people who have chronic health conditions and can make it difficult for the body to handle increases in thyroid hormones and any other medications too. It takes a little while for the body to get used to the T3 in Erfa, especially when it has been deprived of it for so long.

Perhaps taking 1/4 grain twice a day, 6 hours apart, might help. Many people can't take all their Erfa at once. I take my NDT in 3 doses. I have pretty robust adrenals at the moment but I can't take it all at once.

One of the other admins on here had trouble increasing her dose each time, until she sorted out her adrenals - getting her cortisol levels a bit more normal. She is now able to increase much more easily. Hopefully she will respond to this if she is around later.

The good news is that Edysia is now on a medication containing T3. This will help her to start producing good amounts of cortisol again. T3 is needed for the body to make cortisol.

It is a very slow and frustrating process but please don't give up.

Please keep posting when you can to let us know how she is getting on.

All the best

Carolyn x

Clarebear in reply to PinkNinja

Sorry - only just seen this. Yes I had terrible trouble when I started NDT and with every increase, until I sorted out my adrenals with CT3M. I tried other (expensive) methods with no improvement, so CT3M was great, as all it involved was taking an amount of NDT during the main cortisol production window. I felt the benefit straight away, which was great. It did then take a bit of fine tuning in terms of amount and timing, but so glad iDVD this.

It took me a long time o work my way up to 1.75 grains, due to horrible reactions to each increase, but I have managed the last grain in 2 months with moo ill effects hat so ever :) xx

Rosierebel in reply to Clarebear

You appear very well informed, could you explain CT3M please I haven't come across that and would like to know more, and what is the main cortisol production window, sorry I am still learning here.

First off you can get ERFA in 30 mg tablets which if I remember correctly is 1/4 grain.

Second, at low doses you probably won't see any real improvements. ERFA is a medication not a miracle cure. Patients don't have that name for nothing.

Third, it's a good move to come of the anti-depressants - they cure nothing.

It's an old mantra but true - think positive because we make our future by our thoughts today. Nobody knows better than I do that it's hard to be positive when you're ill, but it still applies to us, even if it sometimes seems unfair.

Lastly make sure that diet is adequate. Vitamin B12 is hugely important to us and may need supplementing.

RedAppleAdministrator in reply to Hypopotamus

30mg is half grain, not a quarter, which would be 15mg. Other brands (e.g. Nature-Throid and Armour) do make quarter grain tablets, but apparently not Erfa nor NPThyroid.

Hypopotamus in reply to RedApple

Thanks for the correction.

I second the B12 recommendation but, given Edsysia's gastric problems, a sub-lingual supplement might be better. Methylcobalamin is more easily used by the body than cyanocobalamin. Jarrow do a good one but I don't know if it contains anything that would cause her problems. Perhaps worth looking into? Given that Edysia has had trouble getting the nutrition she needs due to being so ill, she may need to work up to a dose of 5000mcg. 1000mcg is a good starting dose and is what many recommend as a maintenance dose. Give how sensitive she is, it might be wise to start with the lower dose of 1000mcg.

B vitamins in general, and B5 in particular, are supposed to help support the adrenals. The B12, so it is believed, will help get the T3 into the cells to be used. This would mean there would be less "floating around" in her system and this should hopefully stop the unpleasant side-effects. Vitamin C is another good one.

Above all, rest is very important. Sleep is even better but I know she has been having trouble with that. Laughing is good, so perhaps sitting and watching a comedy film or series will help her to relax a little. Perhaps alternating sleep, study and comedy (short periods of each) might help her to get through the day.

Setting small goals is important. If she can read a page of her text book, that is a achievement and she should see it as such for now. She is, and has been for some time, very ill. Managing anything like that when you are so ill is an achievement.

It's stories like Edysia's that make me wish I could just wave a magic wand and make it all better.

It's just a mine-field isn't it?

Take care and remember to look after yourself too, Tony.

Carolyn x

Tony63 in reply to PinkNinja

Thank you so much Carolyn I'm on the Jarrow site now.

Tony63 in reply to Tony63

Do you order it from the US or a UK stockist?

PinkNinja in reply to Tony63

I order it from a UK stockist called Healthy Kingdoms but they appear to be out of stock at the moment. Sorry I wasn't around when you asked the question. I'll see if I can find another reputable seller and get back to you.

PinkNinja in reply to Tony63

This seller is in the UK and gets a good rating but is a little more expensive that the seller I used. I think mine was about £17.50. This one is £19 but it is free postage. It contains enough for 2 months.

I hope Edysia is feeling a little better this morning. Please let us know how she get on.

Carolyn x

Just to say I asked four GPs for B12 shots before I got one to agree, the improvement is no less than miraculous.

The shots cost .60p each and can do a healthy person no harm. The GP will insist on seeing macrocytic aneamia on a blood test, but B12 deficiency can exist without macrocytic aneamia. The gps aren't being taught this.

PinkNinja in reply to auldreekie

I had macrocytic anaemia and no doctor could tell me what my be causing it! I starting taking B12 and smallish amounts of folic acid and low and behold, my MCV has come down into the "normal" range - just!

It's quite sad when you have to diagnose your own B12 deficiency. They didn't even think to test for it and told me not to worry about it :( Needless to say I am changing doctors and now I have discovered there is a practice closer to where I now live, it seems like a sensible thing to do!

Yana in reply to PinkNinja

Hi Carolyn I went to the doctor in July last year complaining of paralysis in my left leg and tingling in my hands. I thought it was carpel tunnel syndrome. He did some blood test which came back I had a low thyriod. Needless to say I'm still suffering with the same problem. Nothing was said about checking my vitamin and mineral status.

He did however say If the blood tests came back negative, he would reffer me to a Nurologiest.

I was reading the blogs yesterday, i think it was you who mentioned vit b 12. I went out and got the one you recommended methylobalamin 1000 mcg took it last night, and had quite a good nights sleep, only had the tingling first thing this morning as apose to during the night. It's early days but I think I'm on the right track.

It is sad, like you say about diagnosing your own deficiencies. If It wasn't for Thyriod Uk and the people on these blogs I dont know what I'd do!

Thanks Carolyn

PinkNinja in reply to Yana

That's good news that you feel on the right track now. B12 deficiency can cause all kinds of neurological problems. I had tingling, numbness and nerve pains (like electric shocks) in my hands and feet. I had even seen a neurologist to see if this and the constant dropping things was down to a nerve problem. I had tests and they came to conclusion that it was arthritis in my neck and lower spine. This wasn't confirmed. I was told that if it got much worse they would do an MRI but that it was too expensive to do at this stage and they wouldn't want to operate just yet anyway because of the risks.

Well, over recent months these symptoms have stopped and I do think it is partly down to my thyroid treatment and partly the B12. Either that or my arthritis is miraculously cured ;)

Yana in reply to PinkNinja

You'd like to think your in safe hand when you go to see a neurologist, It just goes to show even the experts get it wrong! The the only problem i have now is with self diagnosing, is that I dont know whether this is the correct dose for me. Not sure what to do, just carry one with this dose or reduce it after a period. Any thoughts?

If I carry on with the 1000 mcg I'll be ordering it on the internet as it's much cheaper.

I take Armour Thyroid and had huge problems increasing my dose. I had to increase by 1/4 grain every 2 weeks and sometimes even that was too much and I had to have a break of several weeks before my next increase. I have at last reached 3 and 1/2 grains which has taken me a year - my GP said 'I never thought you would get there'. In the early days I suffered the symptoms you describe which took about 6-7 days to settle each time then it was nearly time for the next increase! I also found things got worse before they improved. I second the B12 as I have recently found out that mine was barely in range though I was told it was normal and am sure my progress would have been better if I had supplemented earlier. Recent increases have been less problematic though I still find I have to have a few weeks break after each 1/2 grain increase but am hoping I am nearing my dose. some days after an increase I spent most of the day in bed but am glad I persevered though it is a long job and as has been said we are not called patients for nothing!

debjs keep an eye on B12 is really is a life threatening deficiency. - hard to believe one vitamin is so vital.

How lovely that Edysia has a friend who can give her encouragement and support, I hope that by persevering there will be a change for her. We are all very caring and want to see each other finding answers, even though we are all different. Please do give her my blessing and a hug. Edysia, we hope you will be well enough soon to come back yourself. In the meantime, at least you have someone on your side.

Marie XX

I've just started on ERFA half grain and have been advised by the Doctor and Pharmacist to take half grain for up to three weeks before increasing it to 1 grain which I believe is about the same as 100 mg Levothyroxin. Was she on Levo at all beforehand? At times on Levo when I needed to be in between the dose i.e. 75 mg I was advised by the GP to take 50 mg one day and 100 mg the next to get it, so think possibly you could do the same here and take it alternate days until she gets used to it. I have been told that you need less NDT than Levo, half grain is written on mine as 30 mg 1 grain written as 60 mg which is I believe is about the same as 100 mg Levo. Hope it settles down soon.

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