My body temperature is dropping again is it a sign that I should increase dose of Erfa?

Hello Everyone

Thank you for your wonderful support, all the comments that I have received on my recent blog about suicide were really lovely and full of care. I am trying to reply to all, it takes time. I am very weak. My apologies for delay. I still feel that it would be better if I wasn't alive but I am still here....

I have resigned for now from seeking doctors advice on my health problems I do acknowledge that I just have to experiment with my body... I won't get much medical help...scary ( I know that I might need surgery- gynecological problems, but I am leaving this aside and god knows how that is going to end..)

MY QUESTION:

I was on NDT - ERFA for about 16 days now.

I have started on a very low dose 1/8 of a grain for 2 days.

2 next day on 1/4 of a grain

7 -8 days ( cant exactly remember ) on 1/2 of a grain ( first whole tablet in the morning, then I split the dose in two) - at the beginning i felt anxious and jittery and increasingly more depressed but depression is linked in my opinion to not being able to deal with the whole aspect of becoming ill, losing my memory which makes me really sad and other unpleasant symptoms and lack of medical care of course.

last 2 days I was on 1/2 of a grain in the morning and 1/4 grain in the evening.

What I have noticed is that just after increasing the dose my temperature is raising but after few days it is dropping again. ( adrenals or my body is adjusting to drug and asking for more ?)

After 2 days - well today is a 3rd day of taking 3/4 of a grain my temperature is lower again ( 35.7 - 35.9 during a day)

Shall I increase the dose or shall I wait ?. It might be that the stress and all unhappiness, depression and felling that I am in a place where doctors know nothing drains my weak body out of energy which causes temperature drop.

Would that be harmful if I increase the dose from 3/4 ( 1/2 in the morning and 1/4 in the afternoon) to 1 grain now ( 1/2 in the morning and 1/2 in the afternoon )?

I have never tested my adrenals but believe that after what i have been trough my adrenals are not in the best shape.

I wrote and email to dr S a while ago but he is very busy and tired and cannot answer.

Does anybody has any suggestions please?

Thank you.

Exx

20 Replies

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  • Yeah my temps dropped after my last increase! Not that they were high in the first place!

    I've just increased by 1/2 again so well see what happens this time....

    Si

  • Thank you Si. My temperature wasn't high in the first place either 35.9- 36.1C, but then it did increase for a while after I have started Erfa.. and then dropped again and increased and dropped again etc.

    Whats your dose now? How slowly did you go with the dose increase?

    Exx

  • Hi

    I was on one grain for ages then went up to 2 for months and this week Dr P has suggested i try another 1/2 a grain. Of course this is while supporting the adrenals. So i am of the very slow increase brigade lol I took too much initially and that was obvious by racing heart etc.

    Si

  • Thanks Si. So you just started from 1 grain and then added 1 more? What do you take for your adrenals? Is it NAX? or something else ? HC?

  • Yeah I believe I did. I guess um not that sensitive. I can't remember halving pills.... Not got very long anyway.

    I'm taking all the supplements plus yes, Nutri adrenal and Nutri extra. Lots of then! Lol

  • Hi Edysia - I had a look on the STTM website and they say to raise 1/2 a grain every two weeks until you get to the 2-3 grain level, at which point you should slow down. I have included a link - you need to scroll down to number 10:

    stopthethyroidmadness.com/m...

    However, personally I have had to go much more slowly than this and have fournd 1/4 grain increases more easy to tolerate.

    It can be a slow process to get up to the correct dosage - but definitely worth while :) xxxx

  • Thank You lovely Clare. I will wait another week ( if I manage to), I cannot go slower, but I probably have to be careful with this. I wish I could just take 2-3 grains from day one and be sorted.... my wishful thinking...

    It really looks that I have to cancel my exam and that is going be a loss, I have postponed it 3 times already, went into lengthy appeal process with university. I won the appeal and they allowed me to take the exam this April ( last chance), and now I am too weak and too foggy too study ... losing my entire module and all the study.. losing money that I spent on my education ( lost loans, and grants)... and NHS is guilty of not giving diagnosis and treatment on time... they do not even know how many lives they destroyed.. ( sorry I am really upset)

    Going back to subject:

    I am sure that whatever happens in my lower abdomen does not help ( pains and whatever causes it makes my body weaker for sure).

    Was your temperature dropping while you were increasing your dose?

    Thank you for the link, it is so nice of you.

    love and hugs

    Edysia xxx

  • With the earlier dose increases I felt awful with each increase and I'm afraid I can't remember what happened with my temperature. Recent increases though have made me feel better very quickly and my temperature has risen nicely, only for symptoms to creep back after about two weeks.

    Maybe you could get another deferral for your exam, as now you are on Erfa, you may well be well enough for the next sitting. Xxxx

  • I moved from 'normal' university to study with The Open University ( due to being too ill to attend normal uni)

    Unfortunately it was the final permission from OU side, it took me 6 months of an appeal to get this exam deferred until April 2013.

    I wont get another deferral :( It just make me so low , I did very well with this module, I have achieved 78%- overall assignments score and 81 % for my project.

    The scores are going to be wiped off from my record... i did work so hard to achieve this despite feeling ill ( at that time along with depression following the bereavement my thyroid problems started to hit me I think)....

    I am worried about your symptoms creeping back - do you know why this is happening?

    Exx

  • Once you are able to increase, more T3 will be available to get into your cells thus, I believe, helping you feel better. Of course, gradual is better than too much.

  • Thank You Shaws.

    If STTM recommends 1/2 of a grain every 2 weeks and I am increasing by 1/4 of a grain then maybe I can increase every week instead of 2 weeks. I am not sure if that is gradual enough?

  • Everyone is different and you may find that, as you are increasing by 1/4 grain a week, that you can increase every week for now. Go by how you feel. I really hope this works for you. I'm taking Nature-throid NDT and I'm amazed at the difference. I have a way to go but it's so good to have my life back.

    My Sensei said today that I'm not quite up to the next grading yet because I don't quite have my stamina back, but she said not to discount it completely because I have been getting better so quickly that you never know what might happen in the space of a week. Even in the last two weeks she has noticed a big difference in the way I can move, remember things and my stamina, speed and strength. A year ago, I couldn't even imagine being where I am today :)

    I hope this gives you the strength to keep going.

    Take care

    Carolyn x

  • Thank you Carolyn It is a good idea to go by how I feel since I am not being guided by any doctor. I am not sure if my adrenals can handle this all... well from the other side my adrenals are still alive after years of horrific events so they might handle every week of increase in Erfa.

    That's great that you have your own Sensei:) I need one too!! Didn't find any but I dint really look.

    Just one more question: How long have you been on Nature-throid NDt? is it a year? What was your personal speed of increasing the dose?

    E xx

  • She's not my own sensei unfortunately :) She's the Sensei of our karate club and she is brilliant. She's very young but has a wise head on her shoulders.

    I have been on Nature-Throid since November (I think). I found I was able to increase by 1/2 every week to start with until I got to 2 1/2 grains, then I waited 4 weeks between increases. My adrenals weren't too bad but I did treat them first. Luckily I seem to be someone who is quite tolerant to these treatments.

  • Thank you Carolyn, so cool to be in karate club!!

    I am feeling worse today. Body temperature 35 C at the moment.

    It is 17th day of my therapy and I am on a 3/4 of a grain. I sent email to dr S but he is busy so I am not sure when I will receive my answer.

    I totally do not know if I should increase the dose or not.

    I feel that I am regressing to being more hypo again. I have same dizziness, feeling of pressure in my head, weakness...

    Your increase was quite fast then

    Do you mean November 2012 ? What did you take before Nature-Throid? Are you taking adrenal support too?

    sorry for asking so many questions but I am stuck.

    Hugs

    E xx

  • Sorry I missed it. You treat your adrenals first.

    Did you take Nutri Adrenals ? Are you still taking it?

    Do you think I should try adrenal support ?

    E xx

  • Sorry one more thing. My head is not working.

    How long did you take adrenal support for?

  • Thank you Carolyn :) It is a good idea to go by how I feel since I am not being guided by any doctor. I am not sure if my adrenals can handle this all... well from the other side my adrenals are still alive after years of horrific events so they might handle every week of increase in Erfa.

    That's great that you have your own Sensei:) I need one too!! Didn't find any but I dint really look.

    Just one more question: How long have you been on Nature-throid NDt? is it a year? What was your personal speed of increasing the dose?

    Lots of hugs

    E xx

  • Hi Edysia

    Dont' forget - Just a pointer, if you want to reply to someone in particular, you have to make sure to click on 'reply to this' otherwise they will not get an email letting them know that you have responded.

    Louise :-)

    x

  • Thank you Louise. I keep clicking wrong button :(

    Exx

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