I have been taking erfa for a month now. I only felt slight improvement for a few days sometime at the beginning of taking it.
I am on 1 grain now and I do not know which way to go.
I am having chest pains, my heart is pounding like crazy, I am really weak, I stopped sleeping again, but my temperature is dropping, now is 35.6 all day ( sometimes 35.4 C) and it never was that bad even before I started to take thyroid medications my temp was 35.9 on waking and increasing during a day to 36.2 C.
I do not know if I should I stop or shall I increase it ? Am I under medicated or over medicated ( I should have a fever if I was overmedicated however some people say that they had very low temperature when over medicated)
Still couldn't get my blood tests done. I am in the middle of the battle with my surgery.
Tried to contact to dr S by email but he is very busy. My friend phoned him and Dr S said that it can get worse before it gets better ...
The problem is I do not know how long this worse suppose to last ? I am scared of increasing dose, I am not sure if I should drop it?? Are there any time scales for being worse ? How do I suppose to know if this medication is working for me??
I am wondering if anybody had similar experiences to mine?
I shouldn't worry too much, 1 gr is still a smallish dose. It is a natural product, being made from a pigs thyroid, so it is far more synergistic to humans than a synthetic product.. It is up to the patient as everyone feels different. If you are better than you were before, it is doing you some good.
Are you taking it as just one dose? It might be a good idea to increase by 1/4 grain but take it at a different time of day from the other 1 grain. You might tolerate the increase better that way. If you can't tolerate the increase just yet, go back to 1 grain for another week and then try again.
Your symptoms are very likely because you are under-replaced. 1 grain is a very low dose. I am on 3.75 grains now and I think I am nearly there. I definitely feel much better.
I hope you start to see an improvement soon but bear with it.
Carolyn x
Thank you shaws. I am not feeling better but worse, that's why I am worried.
a low dose can make you more hypo and worse, try an increase as suggested above and yes try to take a split dose split doses seem to work better at lower dosages
Thanks NBD. I will try to increase soon. I am already splitting doses.xx
Hi Carolyn.
I am on 1 grain for the last week. I split it into 2 doses. I am not sure if I should go backwards and descrease it to 3/4? But then I didn't feel well on 3/4 gr either. I was only feeling ok-ish on 1/2 grain but that lasted only 3 days then I felt worse again and increased to 3/4gr, then 1 day after the increase felt better and worse again...
My dose is fairly average. I did have to increase at least once a week to start with. Sometimes I only managed 5 days at the very beginning before I started feeling bad again, but an increase helped a little. It does sound like you need an increase again.
Thank you again Carolyn. Do you think that you have reached your final dose?
I've only been on NDT for 3 weeks now. I'm up to one grain. I do feel a bit worse in a lot of ways, but I'm hanging in there. The horrible headaches I had at the start are largely gone, and my withered skin has softened slightly. Body pain is way up though. I still feel very undermedicated and cold again. I'm going to increase by another half grain next Thursday. I do think like the others have said that you need to go up. Being on one grain for a whole month is quite a while now on a low dose? XXX
I just had a thought and looked back at your history. You have now been taking NDT, slowly (starting 1/4 gr) since around the middle of Feb, so you have not yet been on a stable dose within one month.
Normally, when you begin a dose, you continue at that dose for at least 4 to 6 weeks. If it is extremely small 4 weeks.
Maybe (I am not medically qualified) drop down very slightly and take dose for 4 weeks then a gradual increment for the next 4 etc etc.
Thank you shaws. what i meant is 1 month of therapy with erfa. 1 grain was for a week. My increases were erratic. i took 1/8 for 2 days than 1/4 for another, then i was 1/2 grain for 10 days ....stop thyroid madness says that you can start from1/2 grain and increase every 2 weeks with 1/2 grain then i started similar pattern ( instead of 1/2 every 2 weeks i decided to go up 1/4 grain every week which gives the same result) My friend asked dr S about the speed of increase but he says that that person can go as fast as 1/2 grain per week but no faster ) . I don't know, it's all mixed u
Edysia, personally, I would stop the medication for one day. I think you would tell immediately if you were over medicated. I did that and felt so much better when it happened to me. If that isn't it, I don't think you would be harmed.
I actually stayed on a half dose for a couple of weeks and then went back up. I don't know if something else was making my Armour work better or what it was.
Edysia, my temperature is never normal. That's why I feel I am never totally out of pain, mainly down my back and down the sides of each leg. I had tests taken recently and asked for the creatin-kinase test which checks muscle damage. I do not know what the results mean and will talk to the doctor about it. It was way over minimum but not extremely high. This is something new to me and don't know much about it.
When it seemed like I was overdosing, now I'm thinking my adrenals may have worsened and so I could not handle my usual dose of Armour rather than the other way around. Probably that is more likely.
Thank you Jane 49. I have started to read it. However Clare is very sensitive to medications. I am not that sensitive. I don't have strange symptoms after increasing, not with Erfa anyway. The only thing that is worrying me is that I started to feel more hypo recently, more than at the beginning .
Hi Edysia - I'm not particularly sensitive to meds - only thyroid hormones it seems. Your symptoms do sound quite similar to mine e.g racing heart and not knowing if you need to increase or decrease. I agree with the avice above. You are most probably under-medicated but personally I would try a small decrease of a 1/4 of a grain and then try going up again in a week or so. Often I would find that the second time I tried the increase, I would be able to tolerate it much better
Hi, I agree with Clarebear. I have had similar problems and can only increase by 1/4 grain every 2 weeks for 1 month, ie 1/2 grain in total and then have to have a break of 4-6 weeks before the next increase. It is frustrating but i have found its not worth rushing if you are sensitive to increases. I have had 2 attempts with my latest increase and still have not managed yet - have had to reduce back by 1/4 grain again. I know how desperate you must be to feel better. I find the first 3 days after an increase is ok then from days 4-7 I have nausea, headache, racing heart, muscle twitching and dizziness. I often had to retreat to bed for those days. Recent increases have been much less problematic until this last one.
Hi Edysia,
I don't know what time you're taking your first dose but try moving it to about 6am. That is what I did because when I first started ERFA it made me feel very shaky. By moving the first dose earlier in the morning that symptom disappeared. Your adrenals may be struggling a little bit. I agree with what the others have said about you being on a low dose. It is a low dose but we are ALL different. Some people need very high doses. But from what I have read they are the exception not the rule. Why not try having a day off. If you still feel a rapid heart beat then have another day off. Then start by introducing that half grain at about 6am and your next half grain about 12 noon. When you first started taking ERFA you said that you felt worse. That makes perfect sense. Your pituitary gland will have sensed some extra thyroxine in your blood stream and it will have gone on strike for a few days thinking that it didn't need to do anything. However that thyroxine was only in the blood stream and not at a cellular level so you will have felt rubbish. This is why when you raised your dosage you periodically feel rubbish for a few days. It's all part of the feed back loop. This doesn't explain why you are feeling awful at the moment. If you have been left untreated for a long time it may be that your body just wants you to go a bit slower. Personally I would drop back to a level where you don't get chest pains. This happened to me and I dropped back immediately. Chest pains are not to be ignored. They are probably harmless but your body sounds uncomfortable with the current regime which means you shouldn't ignore it. Why not try just going to half a grain at 6am and quarter at 12 noon or 1pm or even later if you wish. As I said all our bodies are different and we all tolerate things differently. You have been unwell for a long time so drip the ERFA in more slowly. You'll know when you've got to raise it because you go from feeling ok to hypo again.............but that's for the future.
Xxxxxx
• in reply to
Just a few more things. Some people do feel a bit hyper on ERFA. It may be worth ordering another NDT like ARMOUR or NATURETHROID just to have a back up in the house. If this feeling of hyper doesn't go away at all after you've rested off ERFA and restarted it, I would consider switching to another NDT. The pharmacist where I get my ERFA made up says that the people he has on ERFA and the people on ARMOUR is about 50/50. Which is interesting. It proves once again that we are all different.
The best I've ever felt was on ARMOUR thyroid but I suddenly went hyper and so flipped back to ERFA and just stuck with it out of habit more than anything else. NATURETHROID made me sleep all the time but there are others who swear by it. Have you cut out all caffeine?? Including caffeinated tea?? If not, do so. I cannot drink caffeine at all.............I have anxiety through the roof if I do. I drink de-caf tea and no coffee at all.
Xxxxx
Keep us posted!
Xx
• in reply to
Thank you for reply joesmum. Sorry I can't reply properly right now xx
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