Any help appreciated

Hi I am new here. Desperately in need of advice. 

10 years ago I started getting ill, sore joints, tired all the time, depression, being cold, difficulty with brain stuff. It was suggested I had fibromyalgia, it wasn't properly diagnosed at the time, but I was treated for it ie high dosage of anti depressants.   About 3 years ago I was on the net researching it and found out that the coil I had might be causing some symptoms, so I got it taken out and things got better, was back to myself. Lately I started getting cold again and the last 2 weeks my joint pain has appeared again with a vengeance. I went to the doc today and he said the fibro was back. I asked for my recent tsh levels, normal at 1.7. I asked for t3 and t4 to be done, but he said no as tsh were normal. Am I just clutching at straws wanting it to be thyroid !! I can't and won't live with 'fibro' again and I told the doc that. Am not living thru all that again, doped up on anti depressants and making plans to give up work and live life like a cripple. 

Please can anyone give me hope that it could be thyroid and what I should do. 

18 Replies

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  • Are you able to have tests done privately ?

    thyroiduk.org.uk/tuk/testin...

    It is possible your FT3 is very low - you really need the full profile tested .....

  • He did mention other results, but I had gone into melt- down by that point, so dont know what they were 

  • Low T3 can be one of the things contributing to overall body pain.  Are you able to have tests done privately - as posted above ??

    You are entitled to have copies of all blood test results as your legal right ..... you can then monitor your own progress....

  • Am in the north of Scotland, but could get tests done myself. 

    Would I have to write to my doc to ask for copies ?

  • nhs.uk/chq/pages/1309.aspx?...

    See Clutter's reply below ....

    OK so have the tests done yourself if your GP and the Lab will do them - then post the results in a new post for people to comment.

    I was diagnosed with Fibro back in 2000 by a Consultant Rheumatologist privately - Hashimotos was diagnosed in 2005 - and since optimizing the thyroid treatment to the best of my ability the Fibro has taken a back seat.  Once it is on your records they will blame everything on the Fibro.

    Low thyroid MUST be ruled out before accepting a diagnosis of Fibro.  So ensure you have the TSH - FT4 - FT3 and the Thyroid anti-bodies tested.  It seems that people with the auto-immune thyroid illness seem to suffer more with Fibro.  If you live in the North of Scotland then it is quite possible your VitD is on the floor -  again causing pain.

    Have you looked at Dr Sarah Myhills website ?  She has written a book on CFS.  Are you gluten free ?  Gluten can create inflammation in the gut which can cause painful joints along with other problems.  Do you have any gut issues .... ?  Sorry lots of questions - but it is a multi-faceted condition and there is so much we can do for ourselves.....

  • You were diagnosed with fibro too ! I don't mean to be nasty, but that does give me hope. Yes I agree they will blame anything and everything on fibro, that's what happened before. I did tell the doc I wanted tested for everything before settling on fibro, I think that's why he said about the specialist. 

    I don't know about vitD will ask to get that checked. Gut issues, I don't know about gluten, will have to experiment with that. My stomach does bloat after eating carbs and I do get tired after eating !!

  • I think you have answered your own questions about your gut.  Check out the website below ...

    vitamindcouncil.org

    Click onto health conditions and be amazed.

    Did you check out Dr Myhill's website ?

    Click onto my name and you can read about my journey to wellness and the hurdles jumped !

  • Could also be:

    Coeliac Disease

    B12 deficiency

    Anaemia

    Vitamin D deficiency 

    (Or all of those things together. :) )

  • The doc said he would send me to a specialist in fibro. Just wondering if he would do tests before a proper diagnosis 

  • Fibro isn't a diagnosis, it's a symptom.  Could be a symptom of hypothyroidism, hypoadrenalism, Lyme Disease and/or other infections.  Have you been tested for Lyme Disease?  The NHS test is rubbish, so you'll probably have to have it done privately.

  • Yes I have been tested for lymes and it was clear

  • Was that the NHS test?  It's always negative except for new infections.

  • Depict,

    TSH 1.7 is euthyroid (normal) but does not guarantee FT4 and FT3 levels are adequate.  If you order the private thyroid tests Marz linked to you be able to confirm or rule out thyroid dysfunction.

    Ask your GP receptionist for a printout of your results and ranges (the figures in brackets after the results)and post them in a new question.  We'll be able to advise whether the tests Jazzw has recommended have been done or may be a good idea to request your doctor tests.

    __________________________________________________________________________________________

    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • Do I ask for the last result or  should I ask for a few ?

  • Depict,

    Results within 40-days of testing should be free of charge other than a nominal £1/£2 which may be charged to cover costs of printer ink and paper.  If you want results for all your thyroid results your practice may make a charge.  You can request  the entire medical record held at your practice for £50.

  • I have just phoned the gp to get a copy and receptionist said she had to get permission from a doc ! Will wait and see what happens

  • Hi,

    My TSH is normal, despite most of the symptoms of hypothyroidism. After years of wrangling with endocrinologists, I skipped the private testing, & went straight to taking NDT. I started with a low dose, in case it wouldn't help, & increased every two weeks until I started to feel better. Wish I'd known I could do this sooner! I'm going to try adding a little T3 next month.

    M*

    ps I'm not completely gung ho.I did the Barnes basal body temperature test for 3 months, to confirm my suspicions. My temperature is still lower than normal, but on average, has increased by 1 degree.

  • got a fuzzy sore head this morning but did some looking. Vitamin D3 is best and daily dose is 5000 iu a day. Is that right ? Is that every day ?

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