I wonder if there is an end to this problem

I don't really know if i should write...

I am stuck in bed and I can't do much more apart from writing few words.

I am using my mobile to type it up .

I have increased erfa again ( as planned 1/4 gr per week), one day I felt better but again I am on the spiral down. Temperature is dropping again, I am weaker than ever. No chest pains but I feel like I am much more drained. My MRI is postponed. Still can't have mt blood tests done. Never ending throat infection. I haven't been out for a week. I have fainting episodes . I don't have energy to get to surgery, they wouldn't know what to do any way I suppose.

I thought that after a month on erfa I would get even a tiny bit better but it is not happening. I don't know if to believe in anything or not. Does it suppose to be like that? Things go wrong all the time. It seems that nothing depends on me. Whatever I try to do, things get ruined last minute. I really don't know anything anymore.

37 Replies

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  • Hi Edysia - I think you need to give it more time. I probably felt worse for about 6 months before gradually starting to feel better. It then took about another 6 months for me to feel pretty much back to normal. Of course it may be much quicker for you though. Xx

  • Thank you Clare. I wish I had this patience without doing harm to myself. Being stuck in this sick state makes me more and more depressed and being more depressed affects my general well being and slow downs recovery. I have been stuck at home for 2 years because of feeling unwell and perspective of being stuck for another year or more.... too much to take xxx

  • Sorry I know how hard and frustrating it is, but patience is really key when trying any of the available treatments. Were you on thyroxine before the NDT and if so how much and for how long? xx

  • Hi Clare

    I was on thyroxine for 2 days :( it caused me such stomach upset that I decided that I won't take it again. I know that I could try purified version of levothyroxine but i am not keen on it as I have read too many bad stories about this drug. Erfa doesn't hurt my stomach but I literally feel nothing after I take it( maybe slight improvement after dose increase which lasts for 2 days, then I feel as hypo as I ever was.

    Chest pains that I have experienced are result of terrible anxiety attacks triggered by doctors. I can't win with them...

    E xx

  • Hi Edysia, you have been through so much but you need to persevere..just wondering what your diet is like...us thyroidians can be so sensitive, I would also suggest as hard as it is to look at this as you need to boost your mineral and vits regardless...if you start writing down what you are eating you can look at things more objectively...it has a big part to play especially if there is malabsortion...take care xx

  • Hi sorrel89 all vitamins and minerals boosted to max. I couldn't possibly swallow more vit and minerals. I am on a gluten free diet, eat boiled vegetables ( carrots, potatoes and green beans) , bananas. Yellow cheese, eggs, crack breads, boiled chicken. No malabsorption as I had vitamins deficiencies and they are gone thanks of oral supplements xxx

  • I would ugrge you to go to your Drs , with somebody who can tell your usless Dr to sort you out with proper testing and referrals.

    Being anaemic will knock your energy down. If like me your suffering malasorption, It may take little longer to perk up. But I would strongly suggest going to your GP armed with somebody who will fight your corner with you.

    xx

    P's huge (((((HUGS)))))

  • Hi ravenhex.

    No energy to go to docs. Hugs back to you xxx

  • Hi Edysia,

    What dose are you on now? Are you chewing the tablets? I haven't noticed any real miracles yet but I'm only on 1 grain so probably have a long way to go. My skin is definitely slightly softer, but the weakness, exhaustion brain fog etc etc is still the same. I think it takes a month for each dose to get into your system.

    It's so disappointing I know, I'm in my 2nd year with treatment and I'm not the most patient person. Have you had your adrenals tested? That's my next move. But in the meantime I'm hanging in with the NDT.

    Hugs, XXX

  • Hi . I am on 1 and 1/4 gr. xx

  • Hi Again, I did chat to a very good cyber friend on this site who takes NDT, she said she didn't feel any improvement until 2 Grains. This keeps me going. XX

  • Yes I am chewing tablets.

    Xxx

  • Edysia,

    increasing by quarter of a grain per week is quite fast, you aren't really giving your body time to get used to the new dose.

    A more realistic increase is once every three weeks...... so you don't cause further strain to all the other systems......

    Who advised increasing once a week?

    It is hard to be patient when you are so ill, but it takes a long while to get ill and a longer time to get better.

  • Hi Rosie . Dr S told me that I can increase 1/2 per week, but I decided 1/4 per week xxx

  • I might slow down but waiting in this state is just unbearable xx

  • It is ok for some people to increase every week in the beginning on NDT, however it is recommended to slow down to 3 to 4 weekly once you are on a higher dose ie: over 2.5

  • As Nobodysdriving says, 1/4 grain increase per week is fine until you get to about 2 grains, unless you have problems with it in which case a slower increase is recommended. I was increasing by 1/2 grain per week until I reached 2.5 grains, then I slowed down to increasing every 4 weeks. Once I got to 3.5 grains I slowed down to 1/4 grain every 4 weeks. Due for another increase soon.

    You are right that it can cause a strain on your systems if you increase too fast, but 1/4 grain a week should be fine for most people. But, as always, we should listen to our bodies and if we experience adverse symptoms, slowing down is a good idea.

  • Thank you Clare and Nobodysdriving xx

    I don't really feel any problems after increasing doses ( it was one occasion when I got chest pains but I am having a lot of anxiety attacks thanks to doctors - long story... Also my life situation brings a lot of stress) . I might extend the intervals to 10 days)

  • Hi Edysia

    I really think you should see your GP . he should come to you as you are so unwell. there are more things happening around the country with phone 111 for medical advice etc. do try to see you DR if that does not work try 111 and if that does not work try 999 and get a medic to check you over as you do not sound like you should do

    Take great care and kindest regards

    Terry

  • Edysia, it 'could be' that you need vitamin b12 injections? it's just rang my bell that many of your symptoms are related to b12 insufficiency (you can have insufficient levels in your tissues even though you have a blood test showing normal range)

    watch this video:

  • Thank you for this video Nobodysdriving xx I was B12 defficient but managed to lift my levels up to 471. Last test was done in December . They do not want to check it again :( I am still supplementing orally - 2000 mcg per day

  • I am not sure how much of B 12 is in my tissues. Well is all down to money and private tests:( too poor for that.

    E xx

  • yes at 471 you can still be deficient indeed. Some people only get better on injections :(

  • Thank you xx I have no way of getting injections. Doctor won't prescribe as my B12 is within reference range of NHS and I don't have anaemia . They are guided by this ancient rules and there is no way I can persuade them otherwise. :( it is sad

  • Edysia, you need to get someone to help you, Tell your GP you will go to accident and emergency if you don't get treatment. I think you are aneamic or have serious adrenal problem.

    Watch the video posted by nobodysdriving. In the short term get some of this

    hollandandbarrett.com/pages...

    it may work to a degree if so you have clue to what is wrong.

    I mucked around with NDT and thyroxene for years (10!) until I recently figured out I am badly aneamic - video above shows why it get missed by doctors (even endos).

    best of luck

  • Thank you Auldreekie.

    I am avoiding A&E as much as I can. I had a pleasure to visit within last few months on 4 occasions. My GP happily would send me there, however even when I land at A&E I am still told go back to your GP and get referred to a specialist.... and on and on and on..

    Thank you for the link. I am taking H&B B12 tablets, I did not try this spray yet, I am also having solgar liquid B12 but it did disagree with my stomach so I am giving it a break for now. I will try again later.

    I have never suffered from anemia, my red blood cells and hemoglobin always perfect ( I have seen the results) My recent blood test ( December 2012) shows 471 of B12 in my blood so not that bad.

    Thank you for good wishes

    Exx

  • Hi Edysia

    have much sympathy for you...have also been chronically unwell for seven years. Am hypothyroid and hypoadrenal..(Dr Mouton found I wasn't converting enough T4 - T3..is that dthe right way round) but I can't take any meds or supplements as my heart/adrenals go mad and back to bed I go!.....if i take supplements it just feeds the bad bacteria in my gut ( long story involving giardia undiscovered for poss 20 years).......so basically I felt stuck in my illness. However this is what I wanted to share with you ....I read on another website...phoenix rising I think....someone with similar symptoms started to do positive visualisation...now this my pragmatic self had sneered at before but in a desperate place I thought hell why not.....so I have started to imagine myself dancing and running and swimming and having a lovely full chest of air and LOADs of energy.....and I am tentatively hopeful that I have a little more energy...ok I still struggle up the stairs but my heart hasn't got so upset and my adrenal glands feel calmer....plus my blood sugar feels more even.......so maybe if you visualised yourself doing something active..something that is positive for you it could make a difference........may feel a little hokey as they say but very worth a try.

    Sending you hope, healing and a big smile. You'll get there.

    Aliciaxxx

  • I'm not sure if it's ok to mention this - I'll edit if I'm breaking rules. I use the Gupta Amygdala Retraining technique. It's gentle and I find the meditations really helpful. guptaprogramme.com/

    Edyssia - I've been ill for 37 years. I coped for 30 then got a lot worse about 6 years ago. The last year have been a nightmare and last Oct/Nov/Dec I was so ill I didn't even know it was possible to feel that ill. I was bedbound, depressed and some days hysterical. I could barely feed myself and get to the bathroom for weeks. That's not a joke. I had to cancel many appointments as I was too ill to leave the house.

    My GP reluctantly (I screamed at him) put me on levo at the beginning of Nov. I feel very strongly that endocrine dysfunction has been my problem all along.

    Please don't give up. I know how you feel - been there, done that, got the t-shirt. The thing is - if you give up you've lost everything.

    I believe that Dr Peatfield offers telephone consultations for those that can't get to see him. 01883 623 125 (I have an appointment to see him in Malvern in April). Phone and leave a message.

  • Thank you Alicia xx visualisation is best advice for me now. That's the only thing I can afford. I am sending you lots of hugs xxx

    I wish you endless health !!

  • Thank you Edysia for the wishes and hugs....am going to sendyou my heartfelt prayers for both your health and money situ....it will changex

  • Thank you for prayers Alicia xxx I need them so much :) both for health and money xx

  • Edysia,

    Maybe this quote will help to keep you optimistic:

    I was diagnosed with Hypothyroidism a couple of years ago and at that point I felt so unwell I could barely get out of bed and through a normal day, let alone train for a marathon.

    Read more here

    thyroiduk.org.uk/tuk/fundra...

  • Thank you Red Apple xx

  • Hi Edysia,

    Like Clarebear it has taken me a year to get to a reasonable dose of NDT and I am still not there yet. Have just found out that my B12 levels are very low so now supplementing that but again it is a slow process. I know how frustrating it is. Like you I spent almost a year in bed barely able to cross the landing to the bathroom and a trip to the Dr was insurmountable at times.

    I found I felt slightly better for a few days after an increase then worse again. I found I could not increase very quickly - only 1/4 grain every 2 weeks for 4 weeks then had to have a break of 4 -6 weeks before the next.

    I found it was important to try to build some routine into my day and and get out of bed for a short while when able, sometimes just a walk around the bed and gradually up in the lounge for an hour then build on that. A friend taught me some tai chi breathing exercises and relaxation which I found helped to give me something to focus on and I was able to do those even when in bed. It is a struggle and a long process but you have started the first steps.

  • so so very sorry. can you get the gp to visit you at home. keep trying

  • Edysia, your B12 serum level is still low, the conversion can break down at several points along the way AND normal people only convert 10-30% of serum B12 anyway! B12 def has got to be a large part of your problem. I am about to try patches (from Amazon) and have bought Hydroxol coalbamin from Germany (lots of europe sell B12 over the counter) to inject myself. We appear to have Nazi's in charge of the NHS who think a simple vitamin is a Class A drug!!! I have bought needles too, total cost for 10 injections around £25.00 in total.

    The reason I've done this is I have experienced injections my GP agreed - just a fluke! I felt wonderful. I didn't know how bad I was until I felt how I 'should' feel.

    I've attached the link to the PA society, more to read and they are so supportive of lots of people in our situation..

    pernicious-anaemia-society....

    Best wishes

  • Hello Auldreekie.

    Thank you so much for your reply and this suggestion.

    I don't think that I have pernicious anemia. I have been checked for the presence of intrinsic factor and I do produce one however I agree my B12 is still very low,( My GP disagrees with that of course)

    Yes it is a bit of a Natzi system here. Cruelty and indifference is great :(

    How often do you plan to inject yourself with B12? and how much ? 1 mg per day?

    I am spending a lot on supplements and ERFA also need some occasional trips to private dr. and I am on benefits. It is very hard when we have to buy everything ourselves.

    Best wishes

    Exx

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