Gluten, CFS, Thyroid Dilemna

Hello, 

Was on 100mcg levothyroxine, 5 days a week and 125mcg 2days a week. Recently my brain fog has cleared up after vitamin D booster. But still having chronic fatigue symptoms (delayed exhaustion after minor activity).  My latest results (30th March 2016) are: 

TSH 1.7 - (0.27-4.2)

Free T4 - 18.1 (10.5-24.5)

Free T3 - 5.1 (3.1-6.8)

I convinced my GP to up my dose to 125mcg, he was worried that i might overdose, but agreed  subject to a blood test in 4-6 weeks time. 

He also said he would refer me to a CFS clinic, but he had to rule out depression and coeliac disease. So he is referring me to a psychologist (for the depression) and told me to get my blood tested for coeliac. The thing is i have been on a gluten free diet for the last 2 years which has considerably helped with IBS and fatigue. So, i would have to take gluten for 6 weeks prior to the blood test, for an accurate result. I guess i will have to do this (i could cheat and not have the gluten and the result will come out negative!) so at least i will know whether or not i am coeliac. 

My questions:

1. Do you think increasing my Levo to 125mcg is too risky in light of my recent thyroid results?

2. Any advise on diet and nutrition whilst on the gluten consumption for 6 weeks (i know i will suffer greatly with IBS and Fatigue). It might turn out that the CFS clinic is rubbish (although it is meant to be a holistic multi disciplinary apporach to CFS)  after 6 weeks of pain. So is this route worth it?!

3. My alternative plan if i don't do the coeliac test is to go on high supplements as recommended by DR Myhill's website which includes optimum supplements for CFS, and start excercising very very gradually. 

Isn't this journey to recovery so confusing! 

Any advice greatly appreciated! Thanks

16 Replies

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  • Ash-S,

    If you've been 100% gluten-free for 2 years it can't be gluten intolerance causing your symptoms.  I can't see any point in eating gluten for 6 weeks to have a coeliac test.  There's no cure for coeliac disease, it is managed by stopping eating gluten.

    25mcg dose increase will raise FT4 and FT3 but is highly unlikely to raise them to the top of range let alone over range.  I don't think there's any risk at all of overmedicating you biochemically.  If you *feel* overmedicated reduce the dose by taking the 25mcg increase alternate days.

    ________________________________________________________________________________________________

    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.

  • Thanks Clutter, yes, i agree with you on the levo dosage. 

    Regarding the Gluten thing - it seems like its a tick box thing the GP has to do before the CFS clinic accepts me. My GP said i should find out for definite if i am Coeliac or gluten intolerant as if i am coeliac i will have to follow a strict gluten free diet rather than follow it 90% ( i have the odd pizza now and again)! He said there are serious repercussions if I am coeliac which might affect the fatigue. Difficult decision to make..... 

  • and after all that the CFS clinic might be a waste of time!

  • Ash-S,

    Well you aren't gluten-free if you occasionally eat gluten so it is worth doing a gluten challenge which means eating more than one meal a day *containing gluten* for at least six weeks before a coeliac screen.

    If you do have gluten-intolerance Pizza Express do gluten-free pizzas.

    *edited*

  • I succumb to temptation once every few months and accept the consequences!

  • Ash-S,

    Gluten belly ache may be worth suffering occasionally but I wouldn't find ongoing fatigue and depresssion acceptable.

  • The NHS testing for coeliac is not always conclusive.  You can have a negative result and still have issues.  Regenerus Labs do one that is far more detailed ....

    regeneruslabs.com/shop/prod...

    As you can see it is a Gluten Inclusive test ...

  • DHEA is sometimes tested in conjunction with CFS (and hypocortisolism)

  • Not risky to ask for another 25mcg in my opinion. When my tsh was 0.1 (0.4-5.0) and ft4 15 (9-19) I was still getting symptoms as in constipation, low resting heart rate of 50, so asked for an increase. My latest bloods are  tsh 0.05 ft4 19 and I feel so much better. My GP is happy for me to stay on this dose as he says it's how i feel and the bloods are just numbers.

  • thanks for the reassurance EB74, i am staying on 125mcg. So far im okay!

  • Hi

    I have read your report several times but am unsure if it is your GP saying you may be depressed or if he is responding to what you have said.

    I agree the dose should be increased and staying gluten free in my book is a good idea.

    Not sure what your other symptoms are to comment on CFS but as I am fortunate enough to know Dr Myhill personally I know many patients get put into the category of CFS and depression when GP's are not really sure what else to do. Trust me getting better from CFS takes more than just a hike up in supplements. She can actually test now if someone has CFS. Also you need to be sure you are increasing the correct ones.

    Eljii is spot on by saying about DHEA as a deficiency can cause chronic tiredness which is not related to CFS. Also a gut dysfunction/absorption test can show if you are actually absorbing all of your food and meds. Total cost is aprox £250 for ASP(cortisol and DHEA) and slightly less for gut(stool analysis) test from memory. I can only suggest that it is worth crossing these off the list because without doing so its all a guess. Also most people I know rarely have only one condition. Also the cost of putting these things right is minimal anyway. Both are on Dr Myhill's web page.

    If you need any further help please just ask or message me.

     

  • Howard, i'd love to talk to you as i am very interested in Dr Myhill's website information. Its a bit of information overload at the moment but i will PM you. Thanks

  • 92% of people do not get well on a GF diet alone. Their are cross reactive foods to avoid too like rice, corn, sesame etc.. I would read Dr. Josh Axe website on diet info and fighting inflammation and autoimmune disease.

    Also mark hyman on healing autoimmune disease and inflammation.  

    My son has ibs, i have hashimmotos and lots of pain and swelling.  It is a long process to heal, but it is worth it since we have gotten no help from mainstream medicine.  I will not go back on all their damaging meds, that only cover up symptoms. We are both off of all dairy, recently off sesame , corn, rice, and gluten, peanuts, oats.. so many things that i cant remember.

  • Thanks for the heads up Faith

  • T3 is the active hormone which controls the metabolism (and symptoms). T4 is a storage hormone and needs to be converted to T3 to become active.

    Your free T3 is in the high part of the range which would be good for most people, but you may however actually need even higher free T3 to feel well.

    This could be caused by thyroid hormone resistance (impaired sensitivity to thyroid hormone). This is a genetic condition which means that the body needs high levels of T3 to function normally.

    I will send you a personal message about a book on this.

  • Thanks Sandy

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