I do gather now that it is pretty much of a personal trial and error journey with medications in the field of ill thyroid. I am planning to book appt. with Dr P as I have mentioned before, however it might take some time.
I wish scientists researched subject more and I wish more doctors knew about NDT and thyroid function/ dysfunction issues.
I hope not to get more sick as at the moment I feel really bad, my temperature is lower than before I started the treatment. I am more dizzy and more tired. I also have these weird pressure feeling in my head coupled with feeling of being totally spaced out.
Maybe I am wrong upping the dose by 1/4 of a grain per week, maybe not, I cannot find clear answer to that. It just feel that I am getting more hypothyroid than I was before.
I think feeling more hypothyroid can sometimes happen because you are starting to get better (even though it doesn't feel like it at all!). It seems to happen to a lot of people, including me, on increasing dose in the early days. I think that as we get more thyroid hormone into our bodies, our cells suddenly start working again which means we then have less thyroid hormone circulating because it's actually being used. Our bodies start crying out for more, we increase the dose and see a slight improvement followed by another dip as the same thing happens again. I was noticing the dip after only a couple of days to start with. Once I reached somewhere around 2.5 grains I didn't notice the dip until a couple of weeks. This time it has been about 3 weeks before seeing a dip and the dip wasn't as noticeable. I don't know if this is what actually happens but it is definitely what it feels like to me
Generally it seems that if you feel hyper symptoms on increasing 1/4 grain per week, then it is best to slow down because there is likely to be an issue with adrenals or iron or B12 that needs sorting out first. If you are finding that you just get more hypo a couple of days later, keep increasing.
Resting and relaxing is really important and so difficult! When you feel so bad it is next to impossible to relax, but resting should help too. If you can rest or relax it would help your adrenals to recover, obviously in combination with any treatment that Dr P recommends.
I found resting really hard. I've always been someone who needs to do stuff and keep busy so I decided to make resting and recovering my project. I scheduled rests during the day where I would lie down with my feet up and watch TV or even sleep. If I had scheduled it as part of my "grand plan" it didn't seem so much like doing nothing. Crazy, I know!
I can see that you still feel absolutely awful, but you do sound slightly more positive. Hopefully it won't be too long before you start to feel a little better too.
Take care
Carolyn x
Hi Carolyn
Thank you for replying. I have started to notice the dip after 2 days since at the point of being on 3/4 of a grain. For the last week I was on 1 and 1/4 of a grain and at the beginning, for the first 2 days after an increase I was slightly better, my temperature was higher but then a drop again.
I have realized that my temperature on waking is higher than after I take Erfa, especially in the morning??
I measure my temp. while I am in bed, after I wake up and it is usually 36.1, then I take Erfa then get up, move around a bit and measure temperature again and it drops to 35.4 C - 35.6C then it increases at night.
Today on waking my temperature was 36.2 then dropped again to 35.4C then did not increase at all even now, and at this time usually it is around 36.4C. I took higher dose today. I will see how it will go tomorrow and the day after tomorrow. If it will keep dropping I am in trouble....
I am supplementing B12 with 2000 mcg tablets ( in December 2012, my B12 was 471) I also take iron - 20mg of Solgar Gentle Iron as my Ferritn in December was only 23.
I probably should take more but my stomach cannot tolerate more
You right I should relax and rest but I am so anxious and frustrated with doctors and other things that I end up crying every day ( thats not good for adrenals for sure) I did not test my adrenals yet. I will when I can. I suspect they are not in a good shape.
I am frustrated that I cannot do anything, no studying, no reading, no art, no walking, that is very depressing...
I am not sure if I am more positive, I think that I sort of accept more then before the fact that my life wont be the same any more, and that I really cannot do much apart from experimenting with my body and seeing dr P when I will be able to.
I hope that you will get your recent problems with swollen throat sorted soon. I hope that its nothing serious
Edysia, I really do feel that increasing 1/4 grain every week is much too fast and could cause you even more problems because you are not giving your body time to adjust. Have a read of this and see what you think :
Thank you GreyGoose xx I have increased yesterday another 1/4. I took my dose later than usual, I couldn't sleep. I woke up earlier, not feeling
good. I am really scared. I don't know what to do. Thank you for the link. I have read it. I am going to take less today. I will lower to 1 grain and try to stick to it for 4 weeks. I don't know what is going to happen. Maybe I was increasing too fast. I remember I felt slightly better only at the beginning of a treatment when I was on 1/2grain and that slightly better feeling lasted for around a week but then I started to feel slightly worse and after 10 days on 1/2 I have added another quarter, since then I didn't have longer periods of feeling better, maybe 1 or 2 days just after increasing and then I did crush again. My body might not be copying, I don't know, it just feels scary, but I was going by dr S advice who told my that an increase of 1/4 or even 1/2 grain per week is fine.
I know that something is wrong, I can feel it and I am dropping the dose to 1 grain again today
I am amazed that Dr S said that. One doctor told me to increase 1/4 grain every two weeks, but it was too fast and I missed my 'sweet spot' and had to go down again and do it slowly.
It is perfectly normal to feel better when you first have an increase, and then start feeling not so good again because your body needs more. Even so, I don't think it's good to give it more too soon because the T4 takes about 6 weeks to start working. And it sounds as if you are very sensitive to increases, so you need to do it slowly. It's better to do it slowly than to go too fast and then have to go back to the beginning and start again.
Don't be afraid. We are here to help you. We all want to see you well. Trust in yourself and listen to your body.
Hello Edysia - Increasing ERFA should happen with careful attention to how you feel with each rise, after giving time between them to adjust fully as Greygoose says. I had the very unusual experience of increasing slowly in 1/2 grain jumps every 4-6 weeks, and actually bypassed my best dose with hopes for ever better results. Upon reaching 3 grains/day I was actually thyrotoxic enough to develop cardiac distress over several months. On impulse I searched for info stating that ERFA can cause cardiac problems and learned that ANY thyroid med can do that if more is taken than one's body needs. I immediately cut myself back to 1 grain/day - with my doc's subsequent approval - and, months and many blood tests later, now know that just 1 grain/day suits me to the ground and brings back perfect blood numbers for all thyroid hormones plus endocrine system etc. All to say, you're right: with ERFA it's about personal trial and error. Now that my brain is working again, I can look back and see how it happened. I even reported my symptoms of toxicity accurately, but because I was still on such low doses they were not recognized for what they were: doc felt it wasn't possible to become toxic on so little. The good news, though, is that it doesn't take much for me to get a perfect result. That's worth celebrating every day - and I do.
Thank you for replying Ladywell xxx that's really interesting and great news at the same time ! I am glad that you have figured your dose out. It really is worth celebrating !!
Did you feel any worse or better between increases? What was you blood test like before you have started treatment? I wonder what was your TSH, t3 and t4 before? We're you full blown hypothyroid or subclinical? Sorry for asking so many questions but I am just trying to figure out what to do in my case?
Hugs
E xx
Hi Edysia.
Are you dividing your doses evenly? I.e. 3/4 morning and 1/2 in the afternoon?
What time are you taking your first dose at?
What are your most recent blood results?
Are you taking ERFA sublingually or swallowing?
Sorry lots of questions I know....
Xxxxx
• in reply to
Hi joesmum
Thank you so much for reply. I take erfa twice daily. 1/2 after waking( which is after 1 pm because I don't sleep well) and 3/4 in the evening. I do swallow them with water far away from food and supplements. I don't have blood results as GP didn't want to do it , I am complaining now but it's long process. My last blod test results are from December 2012- before I started treatment. I have increased another 1/4 yesterday and at night I didn't feel so good. I am going to reduse dose, maybe I am increasing too fast??? I wish it was over. I am so sick and confused. It's so scary to figure things out without doctors.
E xx
• in reply to
Hi Edysia.
I am concerned about a few things.....
A). Firstly you're taking your biggest dosage in the evening which could be over stimulating you. You may not feel it but it will be happening. Try taking your largest dosage first thing and then the smaller amount later on.
B) I know that you are having a problem with sleeping and your body clock but our circadian rhythm works with daylight hours. It is worth trying something radical here. I have suffered exactly the same as you with sleeping patterns and its a nightmare, so I do get it.
In order to maximise your potential to get well, you need to fix this and I have a suggestion.
Tomorrow morning, set your alarm for 8 am and take your ERFA 3/4 grain. Even if you've only had a few hours sleep. Then no matter how tired you are, try getting out of bed. This sounds brutal but your circadian rhythm and adrenals are linked and those daylight hours are important. Even if you just sit in a chair and watch the TV then six hours later take the reminding 1/2 grain.
Sleeping problems are all part of hypothyroidism They can be awful. When I am severely undermedicated I can go for days without sleeping and I feel like hell.......so tired but just cannot sleep.
B). I'm worried that you might be increasing too quickly. 1/4 grain every week is a lot for some people. You may just need to go a bit slower. It's frustrating I know.
C) without proper bloods its really difficult to know exactly what is going on. Could you go to A and E and tell them how unwell you are. They can't turn you away. I think you're so used to feeling like a nuisance that you've begun to believe it. Explain your symptoms. You don't need to tell them how long its been going on but they would run some bloods and then at least you will know your TSH and Free T4.
I so wish I could be of more help to you. You sound as though you are so fed up. Without this site I would have gone loopy.
Xxxxx
• in reply to
Hi Joesmum
Thank you again for your reply. I will try to do it tomorrow. I will get up at 8 am and take erfa at that time. I am reducing to 1 grain now. So my second dose will be 1/2 grain too. I hope I will manage because I can't go back to sleep when I take erfa. So I will have to stay awake all this time.
I am much weaker than I ever was. Today I spent all day in bed. It is getting harder to prepare food for myself. I am not sure about A & E they won't test all, maybe just TSH they won't tell me results, and then I would still need to get to doctors and ask for printouts. I am having all sort of infections so I probably would pick more up at A&E.
Did you feel any worse or better between increases? // Better each time...until I began to have toxic symptoms. // What was you blood test like before you have started treatment? I wonder what was your TSH, t3 and t4 before? // Didn't have early full tests, GP wouldn't do them and I couldn't pay for private tests. // We're you full blown hypothyroid or subclinical? // Fullblown: weak, exhausted, befuddled, very touchy & unhappy, headachy, very unwell. Improvements were gradual and it took months to clear the brain fog - could still be sharper but can now function ok, impatience easier to control. Can now articulate things far better.
Thank you Ladywell xxx brain fog is a real nightmare I needed to abandon my studies because fogginess. It's awful, it is like becoming a different person
Thank you once again. The more information I have the easier is to make decisions
How's it all going Edysia? I think about you every time I look at the forum, wondering how you are.
I have some more ideas for you to consider which I haven't mentioned on this forum yet because I am still a bit sceptical. However, here goes - I am hypothyroid and suffered many symptoms over 10 years but became much better eventually on T3 only but still suffer with debilitating fatigue. I am seeing an environmental Dr (private & expensive) and he's found that I have toxic levels and sensitivities to the following:
-Antibacterials and antiseptics (I think you said you are a nurse?)
-Dianimo compounds in hair dye and
-Mercury (probably from fillings and large fish tuna cod salmon).
-Salicylates in food (fruits, tea, coffee, wine, cider etc.)
A friend went to the same dr and has cured her fatigue by avoiding nickel which is apparently quite common (from stainless steel saucepans, some jewellery)
I know all this sounds really wacky, but maybe you have toxins in you as we'll as other issues?
P.s. dr thinks it will be a year or two before I feel totally well. Treatment is to avoid the toxins and take high doses of vits/minerals and eventually have the 'silver' fillings replaced in my teeth. I started this in Jan. and feel slightly brighter and my joints are more flexible.
Let me know if any of this rings any bells with you. Please keep up the blogs!
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