Hashis and going gluten free

Hi everyone I went to see the endocrinologist last week and he's confirmed that I have autoimmune thyroiditis but am not necessarily hypothyroid however because my dad is coeliac he is testing me also and has suggested I try a gluten free diet for a couple of months until I see him again to see if it improves some of my symptoms I just want to know if anyone else is gluten free and if it has helps he says he may start me on some levo next time but he wants to wait and see what my T3 and T4 levels are my tsh is 4.9 but he says that's within normal range so not a criteria for active treatment despite me telling him all my symptoms over the last 10 years

19 Replies

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  • I think he's a damn sadist and should give you treatment! I know a lot of people have gone gluten free and had improvements, but really he's just postponing the inevitable in my opinion. Not everyone is gluten intolerant, and it's a big lifestyle change if it isn't necessary. I feel absolutely no different if I give up gluten, and my homeopathic/naturopathic doctor friend says I'm not intolerant at all.

  • 4.9 may not be his/NHS criterion for treatment but feeling awful certainly is.....

    Suggest he should keep you company on the gluten-free diet so that it is a proper controlled test - evidence-based medicine and all that jazz !!!!!!

  • Haha :-D

    I quite agree!

  • At my consultation I asked if there was anything I could do to stop the auto immune process to which he replied 'no absolutely nothing your thyroid will be destroyed but I just can't predict when that will happen and your tsh is within normal range so you are not hypothyroid

    My mum has been hypo since she was 35 my brother has just been diagnosed at 42 and I at 45 but he seemed to dismiss familial disease my antibodies are at the moment 840 I think normal range is 0-99?? I have periods of insomnia followed by almost sedated sleep, no concentration dry skin a lumpy feeling at the front of my throat, joint pains esp ankles and wrists intense feeling of being cold all the time lethargy moodiness and a 2 stone wight gain despite regular exercise and low fat eating plan and yet he still doesn't think this warrants any active treatment as yet do people have to have a heart attack before they are deemed unwell enough to be treated? Feeling very frustrated at the moment is this normal or am I just being overly sensitive?

  • I think its normal for the UK/NHS but that doesn't make it right. The endo I saw on Saturday commented on my reduced antibodies since I have treated myself, she said they will reduce on treatment anyway due to the lower TSH. They have dropped by half. If you have symptoms, you should be treated in my opinion!

  • could you tell me how you have reduced your antibodies. I had mine retested last month and despite supplements and intake of vinegar I have not been successful. Thank you in advance for any help.

  • They dropped on proper treatment. The endo I saw said they just reduced when your TSH went down. I have also been looking into low dose naltrexone which regulates your immune system, so should help, but I hadn't started it when I had that blood taken. I have just got some, so it will be interesting to see what happens.

  • It is a disgrace and nothing short of cruelty when they have the means to help you but seem happy to leave you suffering so and with such strong family history of it, not that that seems to goad them into action (been there had that). These people should not be part of the caring professions they are heartless and negligent in their practice.

  • I agree with the others that your endo is a sadist who should be treating your hypothyroidism now.

    You need to continue eating gluten until after your coeliac screen else the result will be negative.

  • It may be of help to visit with Dr Tom.

    glutensummit.com

    And the US Thyroid Summit is just about to start with 30 speakers...hosted by Dr Brownstein.

    thethyroidsummit.com

    Blue Horizon do a gluten sensitivity for £149.55 - they offer a £10 discount per test.

    I do avoid gluten and my digestive system does benefit.

  • Just to underline: you must continue eating normal gluten until the test.

    Like others, my opinion is that the doc is a sadist. Even according to current uk guidelines he's supposed to treat symptoms not lines on a chart. If you do have Hashi's your thyroid is burning out. How good/bad you feel will not change just because your blood results change by some small amount, taking you just above/under some quasi-random line in the sand. (Hint's even on the bloods, "range")

    If you're able to go back, armed with printouts from thyroid uk website to demand starting dose of at least t4, do.

    Post-test for coeliac, even if its negative you might try a GF diet (along w/Levi at least!). There's a definite link between gluten and thyroid, which with Hashi's is more important to pay attention to. If it works for you, great. If not you can always stop. If the test comes back positive, don't despair!! Being on a GF diet is so much easier these days. I've also heard that with a diagnosis, you can get some GF essentials prescibed on the NHS.

    Good luck!

  • Sorry for the late reply! The prof has done the test for cd already so have embarked on a gf diet feel less bloated but not a great deal better in myself I am definitely going to go back with questions for him my next appt is 15th July and I have to get a blood test the week before the appt I suppose to see if there has been any significant changes x

  • I went gluten free bout 6 weeks ago. Not been tested since, but I have to say I feel better than I have for a long time. I am not intolerant or allergic, but I developed really dry itchy and scales skin. It was awful. Funnily enough I don't have it all anymore. My itchy scalp has gone and my hair feels nicer(it was really coarse and dry). It is a bit of a pain, but I don't eat most of the rubbish I used to grab. I would recommend it even if you don't have sensitivity

  • Thank you for your reply it's much appreciated I have been go since I posted this I feel less bloated but can't say I feel much different in myself but then it's early days so I will stick at it x

  • With thyroid issues everything takes longer, so do stick at it. Let me know how you goton if you have timetake care

  • A lot if people below seem keen to point out the failings of the doc here and don't get me wrong they have been useless with me. I've had underactive thyroid for 14 years and in that time have mostly felt like everything was an effort. Not to mention my tiredness mood swings irritability feeling cold all the time etc so i decided that I would pay to see a nutritionist to see if they could help. After looking at my ailments and food diary she recommended I try cutting out gluten. (She did offer me full tsh tests to find out if in hashimotos or not but I declined) I have been gluten free for one month now and started to feel better after 3 or 4 days. Now I've lost 10lbs and feel like me again. Normal energetic etc. it's not that hard and you've nothing to lose and everything to gain. I say try it!

  • Thanks for your post I am now 6 weeks gluten free and hadn't seen a massive change except last week I inadvertently ate sweets with gluten in and OMG to say I was ill was an understatement so it confirmed to me that I have a definite intolerance to gluten I just hope that if he puts me on some levo that I begin to feel better in myself my voice has become really hoarse and rough can that be a symptom? To be honest I am becoming a bit obsessed with all this and that in itself is getting me down wish there was a magic wand! Sorry for the moan just not having a good day today my get up and go got up and left without me!!

  • deanne I have taken to a gluten free diet and whilst I still have a slow heart rate / raised pulse, tremors, ringing in the ears my sypmtoms have become more manageble. I have also found the need to eat every 2 hours (snacks like raw carrots, brazil nuts) plenty of fruit teas, hot (filtered water with fresh lemon / honey) fresh ginger tea with maple syrup. It's a nightmare reading all the food labels. Avoid milk too (I have replaced milk on my cereals (gluten free cornflake) with coconut (block 100%) mixed with hot water and kept in the fridge. Fruits and veg along with fish, eggs and chicken and beef. Wholesome food is a good foundation. I'm even using olive oil as a mousteriser! Good luck.

  • I'm going to start gluten free next week I've got hashi an underactive well I'm slightly over medicated at the moment I'm a bit clueless when your reading food labels to see if it has gluten In is it just gluten were look for in labels or does it come under other names tia

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