Help please from anyone who is hypo and has gone on gluten free diet.

I have been gluten free since October I am not celiac but suspect that I am gluten intolerant, GP said No without even testing or investigating, so I decided to go it alone and changed to gluten free, I have now not got stomach pain every time I eat and am feelin a bit better in some areas however although I have Osteoarthritis I have been suffering from chronic all over muscle and joint pain for some time now and have been for physio and was given exercises to do which jutst made the pain so bad, especially in my neck shoulders and arms area that I could hardly use my arms, so I stopped doing them, but I have read that going Glutn free can change your thyroid symptoms for the better and maybe let you reduce your medication or even stop taking it, so since I was not getting any help from GP I decided to experiment on my own an d have now had no levo for 3 weeks, and pain has improved dramatically, can anyone else relate to this, or give me some guidance? My last yearly blood test for my thyroid was in November 2013 TSH 0.56 (guidelines 0.35-5.00) freeT4 20.1 Guidelines 9.0-21.0) so since I am near the limits on each result I though I might be getting too much medication now since going Gluten free and hence the chronic pain.

Any help would be much appreciated since like a lot of us her I am having to diagnose myself a lot of the time because of lack of help from GP

Thanks in advance

Gigi

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  • This is an excerpt from Dr Lowe.

    You notice that I didn’t include blood tests for your TSH, free T4, and free T3 levels. These tests are of limited value. They are meaningful only when they are way out of range. If they are in-range or close to in-range, they are useless in telling your whether you have enough thyroid hormone regulation. The only thing they tell us is the effect of the pituitary’s TSH on the thyroid gland, and the effect of the thyroid gland’s hormones on the pituitary. They tell us nothing whatever about the effects of thyroid hormone on the cells of any other body tissues. To infer from the levels of these hormones the thyroid or metabolic status of other tissues is not only indirect—it’s a wild and scientifically-unsound inference.

    I could go on and one with a long list of other useful and often useless tests, but my point is this:

    web.archive.org/web/2010103...

    The GP's should really ask 'how do you feel' not tell you how you are/are not by only taking the TSH into account.

  • Thank you shaws for your reply and the helpful link to Dr Lowe I had a quick look at it but will go back later an read it in depth, as for my GP asking how do you feel. She is wholly dependant on the yearly lab test results and will not deviate from that, she also has a habit of saying to me when I ask if any of my symptoms can be related to my thyroid condition or dosage of levo....what makes you think it's got anything to do with your thyroid? And when I start to go into detail about it she just says I don't know enough about thyroid problems to advise you on that, but at the same time does not offer to send me to see anyone who might know what they are talking about I have been hypo for 14 years and have been on 100 mcg levo most of that time, I have only ever-seen an Endo once, which was last year, and only because I happened to be getting a look at her computer when I went along to see her and she was looking up the results of my yearly thyroid lab report, she was saying you results are fine, as usual, and I caught a glimpse of the word ABNORMAL at the top of the page she was scrolling down quickly so I said why does it say Abnormal on there and she said

    I don't know but look there, she pointed to another line below which said abnormal but acceptable on this dosage of medication, so I said I was not happy with that and asked her to make an appointment to see an Endo to discuss it, so she agreed hence my first and only visit to see an Endo, he was pleasant enough an granted my request to have various test done .....T3 Vit D he also tested for celiac and inflammation, because I had constant stomach pain whenever I ate anything, and I think folate etc. but he did not give me another appointment to see him and I just got a letter to say everything was fine apart from low Vit D an that he hadsent a letter to myGP to start me on Vit D 800 iu per day.

    That was the end of my help so that's why I decided to try different things on my own to see how I get on.

    gigi75

  • Have you looked in the "gluten free chats" section.

    healthunlocked.com/thyroidu...

    There are lots of links and article on Gluten intolerance.

    It is claimed that taking gluten out of your diet can reduce the antibodies that cause thyroid illness BUT I know someone who is on a very strict gluten/dairy free diet, and is doing very well, but I don't think she would dream of stopping her medication. Yes being on a gluten free diet can improve your symptoms but I'm not sure it can do so to the extent that you can stop your medication.

    Have a look at the link and if you want to chat more come back to me or I could possible ask my friend to contact you as she is extremely knowledgeable on all things gluten.

    Moggie x

  • Sorry to hear you've been in so much pain. Your situation sounds difficult, and is compounded I'm sure by the gp's lack of interest/help.

    Being gf didn't change my med requirements or my antibodies, so it isn't really a sure thing and I suspect it depends on how much your own inflammation is to do with eating gluten. I've not heard of anyone being able to stop their meds.

    How much levo were you on when you had that last lot of tests?

    I'd suggest that maybe you're sensitive to something in the pills (filler, colouring, etc). Any way you could try purified levo?

    Alternatively the gf diet has reduced inflammation over time and you're no longer in pain because of that (possibly coincidental that you stopped your levo at the same time as relief from pain).

    Continue to be good to yourself. It sounds like gf is the way to go for you. x

  • Hi, thank you for your kind reply, have a look at my reply above to shaws and you will see That I have a struggle to get my GP to help with my problems on thyroid related issues, also over the years I have asked her on several occasions if my stomach pain and also my muscle and joint pain could be Gluten related,or fibromyalgia or if she had any ideas as to what it might be, but firstly she said of gluten related problems that it was a very uncommon occurrence and seemed to think it was a lot of hype motivated by a lot of celebrities going on GF diets, also about the Fibro issue she said there was no know test for it and therefore there was no point in trying to find out since it could not be identified.

    I maybe should have made it a bit clearer in my initial post about my dates for going GF in relation to stopping my levo, sorry about that but I went GF in October last year and I do find a lot of improvement in my digestive problems, which is great, but I only stopped taking my Levo 22days ago, I still suffered from the chronic muscle and joint pain after going GF so that's when I suspected that I might be over medicated on my levo dosage, and decided to experiment and see how I got on and I can honestly say that within a few days of stopping it completely my pain reduced dramatically perhaps I might still need some Levo, but I am doing this to see what the results are so that I am armed with the info I need so that I can go to another GP in the practise and present her with the facts and see if she will help on the strength of my findings but I certainly will stay on the GF diet now since it seems to be working.

    About my levo dosage I have been on 100 mcg of eltroxin virtually all of the 14 years I have been hypo, but have had problem over the past couple of years on an off in obtaining supplies as you know It is virtually impossible to get it now so have had various generic brands which on the whole I do not tolerate very well so perhaps you have a point about the fillers etc.also what is purified Levo I have no knowledge of it please can you tell me if you get it on the NHS or do I

    Have to source it privately?

    Thank you for your help so far

    Gigi75

  • I can relate to your situation , in fact when I cut Gluten out 6yrs ago I was on a T3/T4 combo. By day 10 of cutting out Gluten I was so overmedicated I cut the T3 out and have never needed it since.

    You say you are not Coeliac - how do you know? It it a condition that affects the whole body not just your gut and your doctor must test for it if you suspect it, though you will have to reintroduce Gluten for 6 weeks in order to do this and even if the blood test is negative you still need the biopsy to rule it out. I didnt know this until I had been GF for a year, I had

    a biopsy which came back negative.

    My medical record states that I am 'Non Coeliac Gluten Sensitive ' I had a range of symptoms which improved, I was low in iron for years as well. I had an iron infusion before xmas and again once my iron was up i was overmedicated - i have dropped my thyroxine dose from 100 to 25mcg, it has been 8 weeks now and feel better than ever.

    My son (16) is also Gluten Sensitive and my late mother had Osteoarthritis and the symptoms you describe and I suspect she was also sensitive.

    I really believe that for ME, my thyroid needs my body to be working properly in other areas in order or it to be working efficiently, and the GF diet and iron are pieces of the jigsaw.

  • Hi thanks for replying to my post, I discovered after an appointment with an Endo last year that I am not showing as celiac after he tested me but there was no other appointment arranged for me and that was how it was left. But I still felt unwell and had stomach ache every time I ate and since my diet included a lot of bread and flour products I suspected that this was a problem for me so I decided on my own to go GF and see how I got on, as you can see from my replies to the other posts above it had an immediate effect to the good on my digestive problems then coincidentally I found out that there is a condition called "Non Celiac Gluten Sensitivity " as you say, and everything just clicked into place, but at no time was this mentioned either by my GP OR the Endo.

    so it is high time they got their act together and find out the facts which are......, even if you do not test positive for celiac disease you can still have NCGS which in some ways is even more of a problem than celiac so the literature says.

    There is also some evidence that if you go GF you can find that you d o not need such high doses of medication as you have discovered and in some cases you can come off it altogether.

    I must also tell you. That previously to me stopping my Levo for the past 22days I did it for a week only........several weeks prior to that and I began to find a benefit and a reduction in my pain but then I began to worry that I should not be doing this and so went back on my Levo and IMMEDIATELY

    The very next day the pain in my neck back and arms came back, so I decided again to try and see how long I could exist without Levo until I felt I needed it again and so far I have not felt the need for it over the past 22days so I will persevere and when I feel ready to do so I will go to my GP surgery and tell them my findings and see what they think they want to do about it

    If anything!! And also ask if they will test my thyroid again to see what my results are after my experiment.

    Hopefully they will be willing to do so

    Regards

    Gigi75

  • I have been gluten free for 1.5 years now and theresult is dramatic but takes time. My life revolved around toilets and my quality fo life was greatly reduced. I often couldnot leave the house and was always dehydrated and exhausted. This was life for 10 years.The NHS - god bless them - without testing, said it was all in my head and sent me for CBT.

    Long story short: in 2012 I was so ill i nearly lost everything. NHS not interested. I took control of my health, ditched levo (which was like poison to me) and went on ndt.

    Also found that in addition to coeliac i had p anaemia and had osteopenia from undiagnosed coeliac.

    I am now on NDT and have been since i went g free. My antobodies have reduced steadily to less than a quarter of what they were. I have also just reduced my ndt dose as my absorption is improving so much.

  • Hi thanks for this great bit of info, it just seems to be tying in with my thoughts and my decision to go it alone for the moment, I am so pleased for you and to hear that you had the courage to try it on your own I had reservations about it and my husband just kept saying go back to the doctor go back to the doctor, because I think he was fed up with me searching through loads of info and reading out my findings and asking him what he thought ....he was always saying I don't know whether you should do any of these things or not it's up to you but I think you should go and ask first! But I knew from past experience that I would probably not get any joy from them .....so just like you I took control and so far I seem to be on the right track (hopefully it will continue to be a success and I will be able to reduce my meds like you)

    May you continue to improve and thank you again

    Gigi75

  • Hi there Gigi75

    Just to say that I have Hashi's/Fibro and all the joys that they bring :-(( and have been unwell for 4 years now with not a lot of help via the NHS until now, due to health becoming so poor I am now costing the NHS a fortune in tests, consultants and meds!! If only they had treated me properly in the first place!!!

    I have had to take a lot of my healthcare into my own hands, and going G/F has been one of them, its been 6 months now and I feel less aches and pains than before, my stomach is a lot calmer now, slight increase in energy and I now possibly absorb meds better now. Sadly my antibodies are still high and have in fact increased!!!! BUT I feel it has been beneficial overall for my health and would never go back to eaten gluten again if I can help it...Hope that helps in some way :-)

  • Hi miss dove, thank you for you helpfully reply

    And along with the other posts above I am feeling really positive now about the route I have chosen it is all very encouraging the help I am receiving from you all and am feeling much better about everything now so I'm going to continue in this way like yourself and hopefully get better and better

    Thank you so much

    Regards

    Gigi 75

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