CFS/ME or Hypothyroid? that is the question!

Diagnosed with CFS but have all the symptoms of Hypothyroid (hashimotos). Told the GP today that I'm not happy with this diagnosis a CFS diagnosis is used when they don't know what the cause is. He said that there is no way they can treat me for hypothyroid because my bloods are in range. Also the lab won't let them request T3 or T4 if in range they won't do it. So the labs have a say in what tests we have done eh! Doesn't seem right.

So I think now, I have to reach rock bottom in my health until my bloods go over the range to get any sort of help. What happened to the old saying, 'Prevention is better than cure'! This would save the NHS so much money in the long run if they adhered to this.

Stop the world I wonna get off!....

19 Replies

  • I have looked at your previous post and the results of your blood tests. Bloods aren't my forte and some members advised you to increase your B12 which is low and your Vit D and other responses. Both can cause problems if too low.

    It might be worth you getting your own blood test for FT4 and FT3 

    and I'll give a link. Then you can have the right ones for a diagnosis.

    Some of our members have self-medicated and your doctor is adamant that your TSH should reach 10 before being diagnosed. These are re blood tests.

  • Yes I'm struggling with Vit. D it's never been within the range (75-150) going back over 2 years always around 52-64 which my GP thinks is OK as it's only a little bit low, he say's. I have to battle every time with this.   

     In December last year Vit. D was 52 so he gave me 20,000 iu per day for two weeks then 2 x800 iu = 1,600 per day, when tested beginning of March it was 64 nmol/l I wasn't happy with this so today he was just going to up it by another 800 iu but I still wasn't happy so he said OK I'll increase by 100% to 4 x800 iu then re-test in June. Why do they make it such a big issue giving out Vit. D?  

    I didn't mention the B12 as I knew it would be impossible, as last year when it was done and I mentioned it I was told they won't do another one for 2 years as there is no need. it was in the 700's but only in 400's 3 months later when I had it done through Blue Horizon.

    I have a battle with the GP every time and it's so hard when you feel so weak and frustrated. It shouldn't be like this..

    Just tried to copy n paste my Blue Horizon results but it wont paste?

  • I would take your health into your own hands.  VitD is not expensive to purchase.  It is fat soluble so take with the main meal or good fats.  Also take VitK2 - as D3 improves the uptake of calcium from foods - and if left to circulate it can cause problems.  K2 directs calcium to the bones where it is needed.

    Do NOT ignore your B12.  The last result from BH indicated you have a problem and anything under 500 can present with neurological symptoms - which if not treated can cause symptoms which may be difficult to cure.  What your GP does NOT know about B12 can harm you.

    Scroll down to view the neurological symptoms of LOW B12.  Click onto Films on the Menu on the Left and watch the videos.  When you see the 3rd one down - you will soon understand how important B12 is.  Please take the time to read the site...

    I would follow the advice of others and have your tests done privately - you are then in control and will make progress in no time.  It is better to channel your energy in taking control of your health.  You have already found that your GP is not being supportive or knowledgeable.

    So have the following tests done for the thyroid - TSH - FT4 - FT3 - Anti-TPO and Anti-Tg.  Maybe post your BH results in a new post so they do not get missed.

    I am not a medic - just a Hashimotos girl with B12 issues.  You can read my Profile by clicking onto my name - and read my journey to wellness.

  • How Does he know bloods are in range if he hasn't tested them?  Is he some sort of  psychic?    Unless you have your free t3, free t4 and  reverse t3 tested as well, there is no way of telling that all is well....  Its just guesswork and wild assumptions.

    Time for you to have a look   At what is going on......   You need to know at least free t3 and free t4  for starters....  A full thyroid profile test is about £100.   Beg, borrow or steal the money.....  I bunged about £500 of testing on my credit card and paid it back once i was able to work........

    Details of tests available privately are on the website under testing.

    Xx.  G

  • I've had bloods done over the last 7 years with this GP as I'm Diabetic type 1 I have annual bloods taken and the TSH range from 0.9 to 4.02 always up and down The lab range is (0.6-6.0). My Diabetes consultant said that it could be a grumbling thyroid issue but until bloods show different they cant do anything. I've had a blood test done through Blue Horizon last Sept. But yes I feel I should have more done. On reading your reply my husband said yes go for it. It's worth paying out. Thanks G x

  • I recently read that all diabetes sufferers should have thorough thyroid testing - and not just the TSH.  It is all part of the Endocrine System and of course auto-immunity plays a role in both the pancreas and the thyroid.  Do you have any gut issues ?  Your up and down TSH suggests Hashimotos - hence I mentioned in my earlier post to have the anti-bodies tested.....

  • I do Marz. I have IBS, slow bowel transit, chronic constipation no matter how much fibre I take, so need to take laxatives every day but they don't work every day. some days I look 8 months pregnant. I never get heart burn so was wondering if I have enough acid. I'm going to request full thyroid bloods with Blue Horizon today.

    It seems that if our GP request to have full thyroid test the lab will refuse if the TSH is in range no matter what the GP says.

  • Yes I do understand the problems with cost restrictions in the NHS and the lack of wanting to help patients to wellness.  Too much dosh to be made by prescribing endless pills and potions for the myriad of symptoms that having a low thyroid can present.

    Am afraid IBS is a syndrome - so nothing specific.  I have Crohns so know a thing or two about guts - having had it for over 40 years.  Again LOW T3 can be the cause - after the brain the gut has the biggest demand for T3.  So when the FT3 reading is low there is NOT enough T3 to go around all the cells of the body.  A bit like trying to spread a teaspoon of butter on a whole loaf of bread !!

    Don't forget to ask for the other tests - like Ferritin and Folate.  Dr Sarah Myhill talks about SIBO - which she prefers to call - gut fermentation - in her latest book - Sustainable Medicine.  She suggests starting with 2mg of VitC last thing at night to solve this issue.  Keep increasing to bowel tolerance - so that may help the constipation too.  You may also be low in magnesium - most people are - so that too would help with the bowel.  Avoid Magnesium Stearate.

    Look up LOW Stomach Acid testing on the net - lots of websites telling you about a home test you can do.

    Did you manage to look at the website I posted about B12 - and the videos too ??

  • Thank you so much marz, your'e a big help. I did look at the videos, it's scary to think that a vitamin deficiency could lead you to being so disabled. Why are the Dr's so ignorant to this? I'm going to order the Thyroid check Plus 10. Xxx

  • Because Big Pharma cannot patent a vitamin and make a stack of money.  They wait until you have dementia and then give you some useless tablets.....  Grumpy Grandma - Crete !!

  • That's not grumpy. Your'e stating the truth, which makes us frustrated knowing what's going on, so that makes us sound grumpy coz we're annoyed. X

  • So what were the results last september?  Did you get  a full thyroud profile?      Did it show antibodies?     

  • I have just looked back through the results you posted 5 months ago.....     The free t3 looks a but low, but is likely to be because of the ferritin, d3 and b12 ....        You need to sort out these....   before anything will work....

    What suppliments are you currently taking?o


  • Vit D and multi vits with probiotics at the moment. I need to order more sellenium and marz has suggested I take VitK2..

  • Multi vits are unlikely to have enough of anything to make much difference. If taking D3 you need K2 asD3 releases calcium in the blood and K2 takes it to the bones where it is needed.

  • Go back to your gp and ask him how TSH can diagnose CENTRAL HYPOTHYROID .

    theres no way on this earth it can because only PRIMARY  hypothyroid will give a rising TSH

    The labs are very very wrong yo refuse to do

    Free t4 free t3 and thyroid antibodies 

    Equally the label of cfs/me is a cop out

    Your gp should send another lab request but write on it ? Central/pituarity hypothroid and insist they do 

    Fre t4  free t3  and antibodies 

  • Going to request a test from Blue Horizon today:) Thanks reallyfedup123

    That's how I'm feeling now Really Fed Up Lol:)

  • Dont blame you these NHS labs are useless

  • It's great reading all your replies/comments, it helps me so much to remember things and see how important it is to listen to our own bodies and not the GP who doesn't seem to care or have a clue about how we are feeling and coping. I have just this minute ordered my home testing kit from BH Thyroid plus 10.

     Thanks everyone Angel xxx

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