Hashiomotos and addressing the antibody attack!

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Hi, I was diagnosed only yesterday and took my first pill today. I have been quite worried to hear about people's experiences levo, but more importantly I'm worried about the anti-body attacks!

I don't have many symptoms except feeling the cold - that's the main one. 

But my results were really bad: TSH 79.9, T4 6.8, AntTPO 4777.7!!!

My question is, while the thyroxine will regulate my hormone, what do people do about the anti-body attack??? I'm getting a coeliac test done, although have previously come out negative.

What do people think? I've read about functional medicine practice is to heal the gut and cut out grains, which I will certainly try. Just wondered because no one seems to be questioning this and it's the anti-bodies causing the destruction!!

Do antibody levels decrease on Levo? What do you do about this? Anyone else gluten free?

Thanks!

​Sarah.

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  • Posted

    Hi Sarah 

    glad to here you don't have many symtoms that is a very high tsh I was diagnosed last oct my tsh was 18 and antibodies 75 and wasn't  feeling at all well my main symtoms were palpitations. My tsh in March is now 1.91 and feel a lot better I'm on Levo 25mg every other day as was experiencing a fast pulse so seems to work. Although now I feel I'm going the other way more hyper! My experience gp doesn't seem interested in antibodies and I haven't been tested since as told they go by tsh level. I would be interested in getting my antibodies tested again to see if they have dropped. 

    Theres a lot of people on here that have a lot of experience on diet and getting other vitamin tests done. If you check thyroid uk lots of useful information as I took the info my GP to check on vit levels and my vit d was 22 now 74 as on prescription so you need to check out vit d and vit b12 levels etc. Some people find gluten free diet really works I haven't tried that. I'm on the menopause as well so difficult to know what is causing what. I've felt OK on the Levo and assume that has got my levels more normal but my dose is low. Hope this helps. 

    Ps you need to take Levo on an empty stomach morning leave an hour before eating for it to absorb 

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  • Posted

    I'm not gluten Free but since being diagnosed last September and being on a gradual increase I've had chronic Auto immune urticaria and angiodema everyday since october........I think it's from the antibodies although the immunologist and the endocrinologist seem to differ ......

    I'm on ranitidine 300 mg levoceterizine twice daily and montelukast at night

    100 mg levothyroxine......

    Next phase Dapsone........

    Seriously had enough lack of sleep is the worst ....even bought a FitBit to show the dc how bad it was lol

    Hairs coming out all the time when I wash it, aches back ache ...feel like I'm falling to bits

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    • Posted

      Are you intolerant to the fillers in levothyroxine? I got an itchy rash and it was down to the maize starch in levo as I'm intolerant to corn (maize is the US name for it). My pharmacist couldn't find any synthetic thyroxine without maize starch, except for the liquid thyroxine and that made me swell up. So I am now on Natural desiccated thyroid (NDT). In UK we can't get NDT prescribed on NHS. Our only option is to get it from a private endo or to buy it over the internet. If you get it by private prescription try Westhroid-P as it states it doesn't have fillers. Otherwise, your option is to do what I do and buy it as a 'nutritional supplement' over the internet. I'm on ThyroGold.
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    • Posted

      Initially I thought it was the lactose so went lactose free for 5 weeks and came off the Levo under drs orders no hives got prescribed lactose free special order from Henning ...then .immunologist test for milk eggs negative put back on Levo :-)

      Back to immunology wouldnt test me for grains wheat etc said it was auto immune ....no further forward :-(

      May ask for referral to gastrointestinal bod ...and get the same response

      Endorsement appt this week she was checking t3 results for hashimotos as antibodies 189 lower than most I've seen posted but would support me not digesting grains and bread without belly ache :-)

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    • Posted

      I also have a histamine intolerance. May be you have? Look up histamine intolerance on allergyuk. They have a list of foods that are high in histamine and another list which cause histamine to be released from your cells. I have to avoid all the foods in both lists. Google daily mail histamine and you will get an article dated 6th April 2011.
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    • Posted

      Two ideas: try avoiding corn (is difficult as comes in lots of guises) or stop levo for 2-3 days and see if hives improves.
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    • Posted

      It costs me about £1 a day depending on exchsnge rate. I am though on a quite high dose of 750mg which is equivalent to 100mcg thyroxine. There are other OTC (i.e. that don't need a prescription) NDTs such as 'Thyroid S' but these have fillers in that I can't tolerate.
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    • Posted

      Hi Barbara

      Not as expensive as I thought.

      If you found a dr willing toprescribe ndt then can you obtain it at chemists here?

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    • Posted

      Springfield Pharmacy

      Sheen Road, Richmond Upon Thames stocks NDT and will post it by special delivery on receipt of a prescription. Last I knew he stocked NatureThroid and WP Throid (aka westroid-P).

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    • Posted

      Hi Lucy, I've just realised you might have meant ThyroGold, if so the answer is no it cant be bought from a chemist in the uk.
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    • Posted

      Hi Barbara

      I take it that your GP provides the prescription. How does your dr calculate the dose bearing in mind that blood tests don't reflect how the patient is progressing or not progressing?

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    • Posted

      Hi Karen, ThyroGold is a non-prescription NDT which I obtain off the internet. Blood tests are useful, my NHS GP tests TSH, T3, T4 monthly. I know peo ple say the TSH isn't any use, but my experience has been that when T3 & T4 are in range, so is my TSH. I also used my basal pulse rate to judge the dosage when I was building it up to the level I'm on now, which is 750mg.
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    • Posted

      Hi Stephanie

      You mentioned antibodies. Whch ones are you referring to ?

      Sorry if this posting sounds bitty I am having another bad day with all this!!

      Take care.

       

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    • Posted

      Thyroid antibodies called TPO on blood test results ......anything between o-9 is okay .....mine were 189.7

      Some people have them in their 1000's so I suppose I'm lucky.....

      Antibodies attack the thyroid gland......

      The thyroid releases hormones that control body temperature...Liver /kidney function metabolism heart rate .....and many more ....that's why we're in the tabs for life as it's a life threatening disease if not sorted as the body eventually will shut down .......dontvpanic .....

      I might also be telling you stuff you already know.

      If your in the UK you are covered under the equality act 2010...... Regarding the illness as it's for life and therefore protected under the characteristics.......just in case like me you've had a few times off work and feel like many others under pressure to go in when feeling bad or catch bugs that take a while as you immune system is supressed.

      We are also prone to getting other Auto immune conditions.......

      I have 2

      Diagnosed hypo in Aug last yr, off once a month since :-(

      I've had hivessince Oct everyday since then but confirmed Autilo immune Chronic Urticaria and Angiodema.......you don't want that one .....so gets you down :-)

      Aches and pains feel like an old woman I'm only 47 .....

      Anyway the thyroid UK websites got loads of good stuff on it to read.....

      Best of luck Steph

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    • Posted

      Sorry what did you mean about in the tabs for life and that it is a life threatening illness and eventually the body will shut down-don't panic.
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    • Posted

      What did I say about not Panicking ....Lol...

      If your thyroid isn't functioning properly then the Drs put u on Levo thyroxine .....start on a low dose and increase until your thyroid results are back in range or what the endocrinologist says you need to be on .....

      Mine telling me It should be 1 tsh that is...

      The tablets are for life .....prescription free and any other medication you receive, you apply for an exemption card which lasts for 5 yrs and renew when it's time to.

      If your drs are switched on they'll do it for you :-)

      You should also avoid taking food and caffeine 1 he before taking the tablets as it affects absorption into your system.......

      Go onto the thyroid UK site it explains everything to do with functioning properly and is pretty useful like these forums

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    • Posted

      Well Stephanie I have had several panic attacks today starting this morning. I am fed up with them. I have had a terribl day tbh.

      t feels like a flare up minues the headaches, sweating and throbbing pain in the eye.

      Barbara has sugegsted selenium so I will buy siome in . Thanks for your reply it has helped a lot.

      Best wishes

       

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    • Posted

      Just read a booklet from the chemist titled menopause. Apparently histamine intolerance can be triggered by menopause. It recommended 'nettle tincture'. Anyone tried it?
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    • Posted

      I had never eaten sweet potatoes until I had to stop eating loads of foods. I rapidily become intolerant to sweet potato too. Shame as they're delicious in soups.
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    • Posted

      What happened to you when you had your reaction? I had some sweet potatoes yesterday and today and my signs and symptoms increased in severity with panic attacks, anxiety etc. I concluded that it was either the seetn potatoes and/or red lentils. I am intolerant to corn as well.

      I am only just beginning to settle down and try to becalm myself.

      Can u eat butternut squash and red cabbage?

      I know that sweet potatoes are high in oxalates.

       

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    • Posted

      I can't eat red cabbage. I haven't tried butternut squash. As to what happened when I ate it - I can't remember. I've reacted to so many foods that what happened with what has become a blur. Can you eat butternut squash? I ate mackerel for lunch at 12am yesterday and spent the rest of the day pooing at hourly intervals. Within 2 hours I had severe stomach cramps. I itched too.
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    • Posted

      Cindy, a very BIG thank you for mentioning oxalates - I googled it and ine of the first things on the list was how soya is high in oxalates. Oxalates cause kidney stones amongst other things.

      The same research also mentioned oxalates and autism - and as I have a child with aspergers (which is an autistic spectrum condition) who has just developed a dairy intolerance and switched to soya milk, it was doubly relevant!

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