Severe ME Day of Understanding and Remembrance: Aug. 8, 2017
Determined to paper the Internet with articles about ME, Jody Smith brings some additional focus to Severe Myalgic Encephalomyelitis Day of Understanding and Remembrance on Aug. 8, 2017 ...
Discuss the article on the Forums.

Underactive thyroid

Discussion in 'Thyroid Dysfunction' started by Jemima37, May 11, 2017.

  1. Jemima37

    Jemima37 Senior Member

    Messages:
    133
    Likes:
    137
    UK
    last year I wasn't ill with chronic fatigue, my gp at the time said I had cfs caused by stress. I was attacked by my brother in 2012 and developed ptsd and anxiety/agoraphobia. Things improved then suddenly my son became suicidal and depressed due to serious bullying in school. I just broke and since then my chronic fatigue got much worse, I'd been struggling about 6 months prior to that with fatigue but gp said all bloods were fine.

    In August 2015 my TSH was 5.35 (0.45-5.5) FT4 10.2 (7-17). Gp said they'd monitor me. January 2016 my tsh had gone up to 6.8 (0.24-4.2) and FT4 14 ( range 12-22). I saw a different gp and he said I was subclinical hypothyroid. By May my tsh had shot up to 9:28 and my gp gave me thyroxine 25mg.

    As my dose went up (I'm now at 75mg) my fatigue improved slightly. I hoped my symptoms of crippling fatigue, leg weakness, severe crashes etc were all thyroid but here I am today still struggling with fatigue and weakness daily and the crashes on exertion or stress.

    Bloods last done end of March this year and my TSH was 1.7 the lowest it's ever been, FT4 19.8 and FT3 5. I test them privately using Blue Horizon or Medicheck due to convinence of home testing because since being unwell my agoraphobia returned purely due to how ill I am. My gp has done all my other bloods from my house but the thyroid I need to do on rising and he can't be here that early lol! Thyroid UK recommended be companies I've used and many of them on their forum use them too. It's made life easier for sure. I test every 8-10 weeks now.

    My gp hasn't officially diagnosed cfs, the previous gp said I had cfs but then I saw a different gp for a second opinion and ended up sticking with him but he dismissed me all of last year saying my fatigue couldn't even be my thyroid despite it being so out of range and him treating it. Strange. He blamed all my symptoms on anxiety and mood saying mood makes you tired. By January this year I was exhausted beyond belief so had a phone call with him and he suddenly after a year said he was worried about my level of fatigue but suggested diabetes, cortisol issues, sodium being slightly low etc.. all my diabetes tests are normal and I've had 3 in a year lol! He's been suggesting all kinds and he's now referred me. Thyroid uk think it's all my thyroid but even once thyroid was optimal I was still crippled by chronic fatigue symptoms and crashes.


    I just wondered has anyone else suffered a thyroid issue and had trouble being diagnosed with cfs? My gp says he thinks I have cfs then he next he's suggesting diabetes or something else I know I don't have lol!

    Julie
     
    Little Bluestem and justy like this.
  2. wastwater

    wastwater Senior Member

    Messages:
    959
    Likes:
    654
    uk
    Hi,I have hypothyroidism without antibodies,taking thyroxine 50mcg got my labs back to normal but didn't do much for fatigue,I'm also starting to wonder about insulin resistance or inherited metabolic disorders
     
    Jemima37 likes this.
  3. Jigsaw

    Jigsaw Senior Member

    Messages:
    412
    Likes:
    412
    UK
    @Jemima37

    I'm sorry to hear what a rotten time you're having.

    Are you in UK?

    Fellow thyroid (and adrenal, the two usually go together), and CFS (and fibromyalgia) patient.

    I've been on thyroid meds since 1999, thyroid and adrenal meds since 2000, CFS dx mid-2000's, FMS 2011. I'm still mostly bed-ridden, despite being on supra-physiological doses. If it was just a case of replacing the hormones, everyone on thyroid meds would be 100% well, wouldn't they?

    The sad fact is that a lot of people on thyroid meds don't improve that much (some do, but by no means all) because if your thyroid isn't working properly, unless antibodies are destroying your T4 and or T3 levels, it's due to a fundamental iodine deficiency.

    I've managed to reduce both my adrenal meds and my thyroid meds since starting iodine supplementation.

    Doctors can be lousy diagnosticians, clinically speaking. They rely too heavily on blood tests and nowhere near enough on clinical presentation/ observation, signs and symptoms, or how the pt feels. You end up chasing a dx, and then when you finally get one, there's often nothing they can do to improve things for you. It's very disheartening, especially when they start throwing "depression" around. Of course we get bloody depressed, we're ill and no-one seems to be able or willing to help us get well again! D'uh! But we aren't ill BECAUSE we're depressed - you've no idea how many times I've been told to cheer myself up if I want to be well again :bang-head::aghhh:
     
    Jemima37 likes this.
  4. Jigsaw

    Jigsaw Senior Member

    Messages:
    412
    Likes:
    412
    UK
    @wastwater

    Pls see above.

    Iodine deficiency is the cause of every hormone and glandular issue going. Iodine is not only needed to make all hormones, it's also responsible for all hormone receptor sensitivity.

    Dr Flechas, one of the three main "iodine doctors", first realised iodine was responsible for insulin sensitivity when a 300 lb woman, who he treated in the ER for a hypo attack with insulin, was later started on iodine. She then had to reduce her insulin because she kept getting hypers.

    When he saw her a month later, she had a month's daily sugar readings all in normal range (previously they'd been off the chart) and had totally stopped her insulin AND WAS WELL! Took Flechas by surprise, because he'd only told her to reduce her insulin until she stopped getting hypers, and never anticipated her stopping it altogether.

    She is still taking 50mg/d, no relapses, still well.
     
  5. Jigsaw

    Jigsaw Senior Member

    Messages:
    412
    Likes:
    412
    UK
    @Jemima37

    He might have a point about your adrenals, though (cortisol). If your sodium is low, that fits with poor adrenals kicking out more sodium than is healthy. Low adrenal function very often goes hand in hand with low thyroid function, because the two are interdependent (and iodine is also needed by the adrenals).

    Do you get salt cravings?

    Have you been referred to an endo?
     
  6. justy

    justy Donate Advocate Demonstrate

    Messages:
    5,312
    Likes:
    12,097
    U.K
    despite your levels being in the normal range you may be undermedicated or need a combo of T3 and T4. 7mcg is not much for someone who is hypo. many people don't feel better until their TSH is below 1. I would ask to try increasing, and testing adrenals, cortisol, iron etc
     
  7. Jemima37

    Jemima37 Senior Member

    Messages:
    133
    Likes:
    137
    UK
    Hi,

    I did a 24 hour saliva test and it showed my cortisol slightly over range on all 4 samples. Gp wasn't concerned as wasn't high enough to be cushings.

    My sodium was low once at 129, range was 133-146. A week later it was back to 138. Recent test 134, 0.1 under the range on that lab.

    I don't crave salt but now add it to all my meals as I never used to add any. I use Himalayan pink salt.

    No I've not been referred to an endo.
     
    Jigsaw likes this.
  8. Jigsaw

    Jigsaw Senior Member

    Messages:
    412
    Likes:
    412
    UK
    One of my old GPs said he was disappointed when the fibro was dx'd in 2011, because, as with CFS, a dx isn't a lot of help as it's an umbrella term for multiple symptoms that they can find no other explanation for. As long as the cause of and cure for CFS remain unknown, I guess they'll always think it's a useless dx and will be likely to chase differential dxs.
     
  9. Jemima37

    Jemima37 Senior Member

    Messages:
    133
    Likes:
    137
    UK
    Thank you

    I've had everything tested. Iron and ferritin are now normal, used to be low. Folate and b12 fine.

    Yes I was told I'd need more thyroxine most likely so I'm going to test again next week.

    I replied above to another member that I had cortisol tested and it was slightly raised on all 4, I did the saliva test. Gp wasn't worried as it wasn't high enough for cushings.

    Thank you
    Julie
     
    justy likes this.
  10. Jigsaw

    Jigsaw Senior Member

    Messages:
    412
    Likes:
    412
    UK
    When he said he'd refer, you, which specialty was he looking at?
     
  11. Jemima37

    Jemima37 Senior Member

    Messages:
    133
    Likes:
    137
    UK
    Thank you for replying

    Members of the thyroid forum say I feel so rotten due to thyroid as some people always do. That's a scary thought.

    My cortisol was tested in January. I did the saliva test and all 4 samples were slightly elevated but gp wasn't worried as not enough to be cushings disease. Thankfully not low to be dangerous. I was more worried about them being low.

    I'm on 75mg of Levo. I've had hyrodi antibidies tested 3 times and all normal. So I'm in the small monitory that have hypothyroidism but not autoimmune. My mum has hypothyroidism, she was diagnosed in her early 50s. I'm pretty young I guess at 37 to develop it. I think stress accelerated it.

    Julie
     
  12. Jemima37

    Jemima37 Senior Member

    Messages:
    133
    Likes:
    137
    UK
    Ahh another person who has an underactive thyroid but normal antibodies, I feel alone in it as most who have hypothyroidism have hashimotos antibodies don't they.

    Were you diagnosed with cfs once your thyroid results were normal? I'm up to 75mg but have a feeling I will be needing another increase.

    Julie
     
  13. Jemima37

    Jemima37 Senior Member

    Messages:
    133
    Likes:
    137
    UK
    He's not referrred me anywhere about the thyroid but he suggested a general medical doctor to discuss my fatigue and maybe get cfs diagnosed.
     
  14. wastwater

    wastwater Senior Member

    Messages:
    959
    Likes:
    654
    uk
    Have you had vitamin D tested?
    There is an NHS in the post test for £28 that gives both levels of vit D,or doctor can test it.
    I never received an official cfs diagnosis
     
    Last edited: May 11, 2017
    Jigsaw likes this.
  15. Jigsaw

    Jigsaw Senior Member

    Messages:
    412
    Likes:
    412
    UK
    The Birmingham hospital? They're brilliant!
     
  16. Jigsaw

    Jigsaw Senior Member

    Messages:
    412
    Likes:
    412
    UK
    Not me! I haven't got antibodies either. Never have had.

    When I worked alongside a doc in private practice who specialised in thyroid and adrenal issues, almost none of our hypo t pts had Hashi's. The vast majority were hypo with no antibodies.

    I guess it's more common now, looking at other posts on PR.
     
    Jemima37 likes this.
  17. Jigsaw

    Jigsaw Senior Member

    Messages:
    412
    Likes:
    412
    UK
    Yes, it's difficult to get a dx for CFS/ME, because they don't know how to treat it.

    And when you DO get a dx, they warble on about GET, or CBT, and depression, and the brain "exaggerating" your symptoms. :rolleyes:

    In a way, I'd rather still be undiagnosed. It hasn't helped me one iota. I get really peed off with being told it's all in my head, or that I need to see a psych so that I can "learn to manage [my] pain levels and fatigue better".

    And exercise is just a joke. I'm already exhausted, and any activity over and above diddling around on my tablet on here makes me collapse. Never mind PEM, I've got Before Exercise Malaise, and During Exercise Malaise, too.
     
  18. Jemima37

    Jemima37 Senior Member

    Messages:
    133
    Likes:
    137
    UK
    Yes it was 75. Told ok.
    Wow that's reassuring to hear. Thank you.
     
    Jigsaw likes this.
  19. Jemima37

    Jemima37 Senior Member

    Messages:
    133
    Likes:
    137
    UK
    I'm beginning to see I'm better off undiagnosed and my therapist said her daughter took 8 years to get diagnosed and they've done nothing to help her! I told her I'd been referred to a general medical doctor or my gp wanted to refer me and she said why??? Thats basically him, a gp!

    I told her he had referred me to haematology 2 weeks ago due to my neutrophils being 0.2 under range and lymphocytes are 4.45 so over range. Again she said why?? He's making my anxiety worse as I'm now terrified I've got cancer for those 2 white cells to be out.
     
    Jigsaw likes this.
  20. Jigsaw

    Jigsaw Senior Member

    Messages:
    412
    Likes:
    412
    UK
    No, please relax, slightly elevated lymphocytes are NOT indicative of cancer, and neither are below range neuts.
    :)

    Below range neutrophils suggest your immune system is suppressed by something. If cancer or another big infection/ pathogen was present, unless you were having immunosuppressant drugs thrown at you, e.g., chemo, organ transplant anti-rejection drugs, neuts would be raised, not suppressed.

    All of the white blood cells show the current activity of your immune system. When pathogens are being fought off, whites go up, not down. Different types do different things and target different types of pathogenic cell, so different types (neuts, lymphocytes, eosinophils, basophils, etc) are raised in different types of bacteria/ virus etc.

    Lymphocytes are T and B cells. B cells produce antibodies when they encounter an infection, and "remember" how to kill it off if it's a repeat infection, and learn how to kill it off if it's a new one that hasn't been encountered before, so B cells are systemic. T cells are concerned with cellular immune response, so are more specific. Upper ref range is 4.5, so 4.45 isn't below range. Perhaps different health trusts have different ref ranges?

    Neutrophils are cells that "eat" bacteria and dispose of it. High levels inducate acute bacterial infection.

    I think it's wise to get things checked, but honestly, if your GP suspected cancer in any form, he/ she would be running a stack of different tests and referring you to oncology.

    I hope that helps put your mind at rest on that score :)
     
    justy and Jemima37 like this.

See more popular forum discussions.

Share This Page