The Final Piece of the jigsaw!

I was diagnosed with fibromyalgia in 2010 when although I had all the symptoms of severe myxoedema my blood tests were pronounced normal. My health got worse, I lost my job as a result and ended up housebound. It hurt to breathe and sometimes I couldn't find the energy to hold my head up!

I decided to take matters into my own hands and did a few private tests. Adrenal stress profile showed knackered adrenals, 24hr urine showed T4 under the normal reference range, I was oestrogen dominant and melatonin peaked in the day instead of at night. I persuaded my GP on the strength of these tests to refer me to Dr S.

Dr S was disgusted at the state they had let me get in and prescribed levothyroxine. Unfortunately this did not work and my symptoms grew worse. Dr S declared I must have a conversion problem and suggested my GP might like to try me on T3.

All hell broke loose! They consulted with an endo at Leicester who suggested they might like to take Dr S to the GMC and I was now in despair so I told them I wouldn't see him again as I didn't want him to get into trouble. I really was now on my own. I did what they recommend you shouldn't do, self medicate and slowly began to improve. My GPs failed to get the T4 to T3 ratio done that Dr S suggested they do to confirm the diagnosis.

I asked to be referred to an nhs endo and now see someone at Coventry. He is sympathetic and said he wishes the GPs had secured a T4/T3 before I started self medicating so he could give me an official diagnosis and prescribe T3. I have just given him the results of my DI02 test which was positive and he wants to refer me to Proffessor Franklin at Birmingham because he admits he is out of his depth. I also tested posotive for a methylation defect MTHFR, and having done some more research into methylation I am convinced this is the final missing piece to my health problems.

Please all of you check out the methylation cycle on the hearfixer website, also Dr Amy Yaskos website. Methylation is the biochemical process that underpins every function in the body and at least half the population have a methylation defect that could be the root cause of all their health problems. If not the root cause then it can impact on other conditions, for instance people with a methylation defect are depleted in glutathione which is the cofactor with DI02 for the conversion of T4 into T3. Hence, if you already have a DI02 mutation a methylation problem is a double whammy!

Regenerus labs in the uk test for DI02 and its a cheap test, if you think you have a conversion problem get it done. Regenerus also do a full methylation pathway panel, more expensive but worth doing, especially if you have any of the problems outined on the methylation websites.

Sorry for the very long post, it looks like "War and Peace" but I hope it helps someone, x

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7 Replies

  • Hi Swingtime! Thanks very much for letting everyone know your story. Let's hope Prof Franklyn is helpful. Are you able to message Louise privately and give her the name of your endo? x

  • can someone explain please what is methyation, the above post is just too much for me to absorb an di am so unwell maybe it willhelpif i understand it?

  • swingtime, boy, has one of the most extensive webpages on methylation I've seen. This will take some time and effort. This is the link.

    Wonderful find, thank you so much. This is going to take awhile. PR

    PS Dr. Amy Yasko also has a lot of info on methylation in regards to autism.

  • where can you get the methylation cycle checked and what can be done if there is a problem?


  • it's quite a complex business getting a fix for a methylation problem, you have to know which defects you have and fix them in a specific order, otherwise you run the risk of causing a methyl trap which is very unpleasant. For instance, the fix for MTHFR is a folate supplement called 5-MTHF but if you treat this without knowing if you have CBS, COMT or VDR Taq you will end up making things worse. The fix is very specific to your genotype. Heartfixer is the best website for those who want to investigate further, but would recommend once you have your results to use a nutritionist who knows their methylation cycle.

    The Regenerus labs do the full methylation panel at £335 and they put you in touch with someone who is knowledgable to help you plough through the results.

    Genova diagnostics do a metabolic analysis profile but this only gives biomarkers which are only clues to any methylation problems and it costs £280. It's best to pay the extra and get your full genetic methylation profile.

  • So sorry to hear of your struggles....its ridiculous huh. Glad you are on the path to finding out the source of things. I have had fibromyalgia for 8 years and only just been diagnosed with hypo....I want to get my adrenals tested etc so will look into what you recommend too. Goodluck

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