User Tag List

Results 1 to 7 of 7

Thread: What next? Any suggestions? Seriously hypo after Radioactive Iodine Therapy

  
  1. #1
    Junior Member Achievements:
    Veteran1000 Experience Points
    ddipity's Avatar

    Join Date
    Nov 2008
    Posts
    3
    Country
    UK
    Gender
    Female

    Rolleyes What next? Any suggestions? Seriously hypo after Radioactive Iodine Therapy

    Hi everyone.

    I'm hoping someone may have a suggestion as to what i can try next after finally reaching the end of the line with the endocrinologist at my local hospital after five years of unsuccessful treatment for my thyroid.

    I was diagnosed as hyperthyroid in 2005 and after a while on meds for that with no real change underwent RAI oblation therapy and went from being extremely hyper to extremely hypo in a very short space of time. Since then I have been on increasingly higher doses of levothyroxine. Eventually, at my suggestion, my endocrinologist agreed to put me on combimation therapy and I have also been on liothyronine for about a year. I am now on 350mcg of T4 and 90mcg of T3 daily. My TSH levels came back as normal in my last set of bloods so according to my endocrinologist I am now cured and whatever I have wrong with me is not my thyroid! She has discharged me back to my GP and recommended that I get my TSH levels tested from time to time but as far as she is concerned she no longer needs to see me. However, I feel exactly the same and have had no relief in my symptoms whatsoever.

    My feet are so swollen I can't get shoes on (even special fitting ones). I am exhausted all the time, find myself falling asleep mid conversation or even while holding a drink and I have gained a huge amount of weight which in turn has caused me to develop severe sleep apnoea. I have lost my job as a result of my condition but was refused ill health retirement on the grounds that what i have is a 'treatable condition' which can be regulated with medication. Ironically, it didn't help that the doctor who examined me for the decision also suffered from hypothyroidism which responded to meds! He accused me of being non-compliant and not taking my medication and suggested that was why I was experiencing the symptoms.

    I don't know whether I should seek a second opinion or ask aboout adrenal stresss etc.. I am at my wit's end and really depressed. My life has effectively been on hold for the last five years and nothing has seemed to work. I've lost a well paid job that I loved and have have become a hermit unable to get out through lack of footwear and constantly feeling exhausted.

    I read something a while ago by Dr Peatfield about basal temperatures and have been taking my temp first thing in the morning. It never gets above 36 so I'm assuming that this suggests that there is still something not right with my metabolism and I would be really grateful if anyone has any ideas about what i can do next.

    I know I'm not alone in feeling frustrated by the treatment I've received and I find it helpful to be able to express my concerns in an environment where people understand how it feels. I've actually got to the stage now where I don't really talk about my condition with friends and family for fear that they think I'm a total hypochondriac with no other line of conversation whatsoever. Mind you, anyone who has seen my comedy feet at least knows I'm not exaggerating that!

    ddipity xx
    Last edited by ddipity; 22nd August 2010 at 02:22 PM. Reason: typos

  2. #2
    Administrator Achievements:
    VeteranCreated Album picturesCreated Blog entryTagger First ClassOverdriveSocial25000 Experience Points
    Mike's Avatar

    Join Date
    Oct 2008
    Location
    London
    Posts
    1,195
    Country
    UK
    Gender
    Male
    Blog Entries
    19

    Thumbs up

    Hi @ddipity

    I think we share the common theme of being Hyper, treated with RAI and going from Hyper to Hypo in very short period of time. But after that, we've totally different scenario.

    In my case, I had so much trouble in the first few months but then I went to see Dr. Peatfield. Okay he is not a doctor recognised by GMC now but he gave me a good advice to check my adrenals.....Got 'em checked and they came low.

    Started on Nutri Adrenal Extra...didnt work for me. Went on Cortef (Hydrocortisone).....okay still struggling but not in a way to loose my job and not being able to do anything at all....(Trust me, at one stage I thought that's what it's gonna happen to me)

    Your Endo has said exactly the same thing what mine said. That my levels are okay so whatever issues I am having is not thyroid ..... he took quite a pride to see my test results within range and thought he has fixed me....he didnt!! He actually screwed me lol.

    Anyway.....to answer your question.....from my experience, nothing will work for you if your adrenals are exhausted. You dont have to be very scientific to work it out....just do the saliva test for a UK lab and you'll see the results infront of your eyes. If they come out too low.....speak to a specialist like Dr. Skinner or Dr. Peatfield and get on something which will fix your adrenals. You taking too much thyroxine will further exhaust your adrenals and you are gonna go no where!!!

    I also think you are on too much thyroxine. Normal dosage is 1.6 x your body weight (Kg) but then again you might have gained too much weight due to being hypo.

    I am sorry but there are so many people who are struggling with health due to incompetent doctors and there is nothing we can do about it

    Another important thing is dont just sit back if your doctor says you are alright....and you aint. Keep investigating, ask questions from people in the same scenario.....read books etc. No one can help you but yourself. I am no where near 100% but it's way much better so you'll get better soon too. It's just gonna take a bit of time and effort

  3. #3
    Junior Member Achievements:
    Veteran1000 Experience Points
    ddipity's Avatar

    Join Date
    Nov 2008
    Posts
    3
    Country
    UK
    Gender
    Female
    thanks Mike,that was really helpful.

    I think the logical next step would be to get a saliva test done and take it from there. Is it easy to get an appointment with Dr Skinner? I know I have seen dates and stuff for Dr Peatfield's clinics but nothing for Dr Skinner.

  4. #4
    Administrator Achievements:
    VeteranCreated Album picturesCreated Blog entryTagger First ClassOverdriveSocial25000 Experience Points
    Mike's Avatar

    Join Date
    Oct 2008
    Location
    London
    Posts
    1,195
    Country
    UK
    Gender
    Male
    Blog Entries
    19
    Depends where you live. I live in London so went to see Dr. Peatfield in his crawley clinic. Dr. Skinner is Birmingham based.

    Dr. Peatfield Dates

    Dr. Skinner

    Dr. Gordon RB Skinner, M.D., 22 Alcester Rd, Moseley, Birmingham, B13 8BE phone/fax 01214498895.



    Dr. Skinner is a private practitioner in the UK, with particular interest in patients with thyroid problems. He holds clinics in Birmingham and Scotland. "I think he is a Top Doc because one of the first things he said to me was "Patient first, blood test results later," said one patient.

  5. #5
    Baby Moderator Achievements:
    1 year registered1000 Experience Points
    Patchy Boy's Avatar

    Join Date
    Jun 2009
    Location
    South Wales
    Posts
    328
    Country
    UK
    Gender
    Female
    mike, im not sure the red apple would be much help- i think they are based by me in newport

  6. #6
    Administrator Achievements:
    VeteranCreated Album picturesCreated Blog entryTagger First ClassOverdriveSocial25000 Experience Points
    Mike's Avatar

    Join Date
    Oct 2008
    Location
    London
    Posts
    1,195
    Country
    UK
    Gender
    Male
    Blog Entries
    19
    Quote Originally Posted by Patchy Boy View Post
    mike, im not sure the red apple would be much help- i think they are based by me in newport
    Where did you do yours from as that was quite good.

  7. #7
    Baby Moderator Achievements:
    1 year registered1000 Experience Points
    Patchy Boy's Avatar

    Join Date
    Jun 2009
    Location
    South Wales
    Posts
    328
    Country
    UK
    Gender
    Female
    thats where i got my test from the red apple- when i sent you the results to understand them for me, cos your good like that !!

 

 

  • Advertising

    advertising
    ThyroidHelp.org
    has no influence
    on advertisings
    that are displayed by
    Google Adsense

      
     

Similar Threads

  1. block replace therapy
    By rompom in forum TSH & Other Tests Results
    Replies: 3
    Last Post: 14th February 2012, 11:16 AM
  2. I started Therapy yesterday
    By Thyroid Guy in forum Mental Health, Anxiety & Depression
    Replies: 2
    Last Post: 11th August 2009, 08:57 PM
  3. Radioactive iodine therapy
    By Susan in forum Hyperthyroidism - Overactive & RAI
    Replies: 14
    Last Post: 1st March 2009, 10:11 PM

Tags for this Thread

Posting Permissions

  • You may not post new threads
  • You may not post replies
  • You may not post attachments
  • You may not edit your posts
  •  
Powered by vBulletin™ Version 4.2.4
Copyright © 2017 vBulletin Solutions, Inc. All rights reserved.
All times are GMT. The time now is 10:41 PM.