Thyroid antibodies – is there a point testing?

Newbie here, bit confused about hypo and Hashimoto

OK, so even though I was diagnosed with hypothyroidism 17years ago and treated with Levothyroxine I don’t ever remember having my thyroid antibodies tested. I don’t remember much from my first diagnosis, only that my neck was swollen so my GP tested for thyroid problems (probably TSH/T4 only). Over the years my dose steadily increased, as did my weight. My hypo symptoms remained the same until recently, when stress, pregnancy and iron, vitD and vitB12 deficiencies (which I discovered recently) made me feel much worse.

My question is: could I have been Hashi through all these years? Or could I have developed Hashi recently after years of being hypo?

I am asking because Im seeing my GP tomorrow (Wednesday) and Im considering whether there is a point asking her to test my thyroid antibodies?

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Moniacho,

Autoimmune thyroiditis (Hashimoto's) causes 90% of hypothyroidism. Ask your GP whether you were ever tested. Confirmed Hashimoto's won't make any difference to your treatment for hypothyroidism.

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Thank you Clutter

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I was thinking about something like gluten-free diet which is often recommended for Hashi. I never tried whether it would help as I was never tested so no Hashi diagnosis...

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I was thinking about something like gluten-free diet which is often recommended for Hashi. I never tried whether it would help as I was never tested so no Hashi diagnosis...

I don't have coeliac disease or autoimmune hypothyroidism. I have hypothyroidism for which there is no obvious cause. As a result I delayed experimenting with going gluten free for about 5 years. When I finally tried it I got benefits within the first few days.

It's worth trying for a couple of months. You never know what might happen. You can always go back to eating gluten if you don't benefit. However, if you do try it you have to be ruthless about it. You can't be a little bit gluten-free.

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Thanks a lot humanbean. Its very interesting that a gluten-free diet made you feel better even though you dont have coeliac disease or Hashi. I thought I would consider it only in case of Hashi diagnosis, but your experience shows that it is worth trying even without it. May I ask which symptoms got better when you started gluten-free, where they gastro-intestinal only or also hypo symptoms?

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I think I have gluten ataxia based on the results of going gluten-free. In other words gluten has damaged my brain more than my gut, although I have had gut benefits as well.

1) I had a temper that was so vile that it terrified me, and it would usually come out of the blue without any obvious trigger. Sometimes I wanted to launch physical attacks on people. I never did though, you'll be pleased to hear, but the control I had to exert to prevent it happening was incredible. About 5 days after I went gluten-free the problem had just melted away and hasn't re-appeared apart from in a minor fashion if I have been accidentally glutened.

2) My depression has massively reduced in severity. I wouldn't describe myself as depressed any more. I do take an OTC anti-depressant (5-HTP) but only in a low dose (50mg) about 4 times a week.

2) My balance is very poor. I would bump into walls, and when I went round corners I would often lurch into the corner. In the dark I would always walk as if I was drunk. With high doses of B12 and going gluten-free my balance has improved. I have few problems in daylight now. I still have a few problems, and have to avoid walking in narrow spaces when I can, but I rarely walk as if I'm drunk now. (I don't drink.)

3) I was very, very low in iron. It took me nearly two years to raise my iron and ferritin to optimal levels. I only finally achieved it when I had a sudden increase in levels after going gluten-free. Now I only need to take one iron pill about 3 or 4 times a week, and that maintains my levels.

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Oh humanbean, Im soo sorry to hear about your symptoms before. Im happy for you though that you found the reason behind them and managed to relieve them. I also have issues with balance and depression/mood swings. My iron is low too, Im currently on 3xFerrous Furamate, but its too soon to test and see if its helping. At least if it wouldnt, I will know now the answer may be gluten. Thank you for that. My B12 is low within the range, 308 (200-900), Im seeing my GP tomorrow to see if they would consider injections, unlikely but hey its worth trying.

You make it sound like its really worth trying gluten-free, whether or not I can confirm hashi.

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It definitely is worth it. I must admit though I was not happy about doing it at all. I resented having to be gluten-free for a long time. And I still miss jam doughnuts, ordinary pasta and all the dishes that can be made with pasta...

I know gluten-free pasta is available, and I have tried it. But all the stuff I've tried has been vile. And a lot of commercial gluten-free food is packed with sugar to disguise the awful taste, even the bread, and is also very expensive. So learning to cook without gluten is well worth the effort.

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Yes - the thought of that scares me at the moment. It will probably be last resort after supplements and checking T4/T3 conversion. But at least I know now that it does make a difference.

Did the change affect your weight at all?

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My weight hasn't changed at all. I was overweight before I went gluten-free and I'm still overweight to the same extent now. :(

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Oops posted before I saw this... Humanbean, you may be like me. I need to stay day in & day out at about 25g of NET carbs to lose weight & tecently had labs confirm I have a sensitivity to casein ( protein in milk) , try eliminating dairy products.

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Boohbette17

Sadly, I'm a total sugar addict. I've been trying to reduce my sugar consumption for three? or four? years, probably even longer.

I last a week at best, then cave in to a mad sugar binge.

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Oh, dont feel alone I know this all too well. Sometimes we are able to slowly reduce amountsby upping our green leafy vegetables as the vitamins & mineralsin these foods fill the brains' needs and another point: Keeping our insulin resistance away is key for weight to drop. Baby steps, you did gluten - you CAN do this too!!👍🎉

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Excellent advice humanbean! Same results plus weightloss going gluten free in my case. GOOD JOB!!👍😊

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I think it is important to know if you have antibodies - TPO & Tg. There is so much we can do to help ourselves - and it also explains other little niggles that pop up over the years. Having an auto -immune condition requires careful attention to diet/supplements to ensure further AI ailments do not join in.

I have Crohns and Hashimotos 😴

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Thank you Marz, you made a very good point:

"it also explains other little niggles that pop up over the years" - yes, it would be great to understand the reasons behind my symptoms. Even if just to confirm its not only in my head.

"Having an auto -immune condition requires careful attention to diet/supplements to ensure further AI ailments do not join in." - thats very interesting because I only started to wonder about Hashi when I saw a dermatologist about a white patch of skin next to my eye and was told it was an autoimmune skin issue. I never wondered before what was the reason for my hypothyroidism. I thought "Im hypo, I take T4, there is nothing more I can do". Its only when I found this forum I discovered how much more can be done.

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Yes I too had a patch of vitiligo on my neck before diagnosis back in 2005. It went after I had been on thyroid meds and supps.

Have you read - Hashimotos The Root Cause - by Izabella Wentz ? She has since written another. Take a look at her website and sign up for a Newsletter if you want to stay informed 😊

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My vitiligo appeard about 4 years ago, it was extreemely stresfull time do to my husbands illness therefore I never cared what it was or what was causing it. At the same time I started taking Fluoxetine - I just read today in here that it is fluoride based and affects thyroid function. Coincidently (or not) that was the time when my own health started going downhill. But Im taking control now.

I'll ask tomorrow whether they would test the antibodies for me. Either way, what supplements did you mean to support hashi?

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If you take a look at Izabella's website there is so much information for you to read and decide what is best for you.

Selenium is one that is needed. I have weekly B12 injections and take a GOOD B complex. Also VitD in spite of living in Crete ! - also Zinc - Magnesium - VitC - Omega 3 - CoQ10 and surely some I have forgotten.

I had the Terminal Ileum removed - where B12 is metabolised - hence the injections. It was done over 43 years ago - sadly I was not told that I would need B12 injections. Started over 3 years ago - and although there has been an improvement I live with the consequences.

b12deficiency.info/signs-an...

The above link takes you to the Signs and Symptoms of low B12 - scroll down for the neurological ones. Also the videos under the heading FILMS on the menu are revealing as to the seriousness of Low B12. Your result looks low to me - and would be better towards the top of the rang. The PA forum do not agree with me and often tell members here that we tell people the wrong information. However I am sticking to the levels I have found helpful as my level was around the 300 mark for years and ......

Important to go by clinical signs as well as test results for both Thyroid and B12.

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Yes, I will check Izabella Wentz's page. I think I saw it already (the name rings a bell), but with my memory as it is I cant really recall now.

I just ordered D3 (Im deficient), K2, Selenium and magnesium. I will read up on Omega3 and CoQ10, thank you.

I checked the b12deficiency website and I do have many of the symptoms, including neurological. I posted on PA forum, and they suggested writing a letter to my GP asking to consider B12 injections. I did that and Im goint to see tomorrow what they say.

Its so frustraiting - with all the conditions conneted to one another and symptoms overlapping its so overwhelming. Its hard to know where to start from and what is most likely to make us feel better - D3? B12? Iron? undermedicated thyroid? URGH!!

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I think you are doing really well and I hope all goes well with your GP 😊

Click onto SeasideSusie and read some of het excellent replies about supplements and where to source them.

I think it is a mixture of everything that makes us well and different things for different people.

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Thank you for the kind words Marz

Yes, SeasideSusie is already helping me with supplements.

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Good luck & be firm about the antibody testing. You sound very proactive... Hooray!🌺

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Thank you Boohbette17

Im nervous but I'll try to be firm. I will come back leter to tell you how did it go.

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Wonderful moniacho👌 you got this!🌈

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Hi Marz and Boohbette17

Just to update you - GP decided there is no point checking antibodies. She knew what T3 is, but this test is not provided by the local lab. She is hypo herself and said she understands the symptoms are still there, I just have to get used to them.

Also, she will not give me B12. My neurological symptoms cannot be due to B12 since my B12 is in range. My short term memory problems may just be due to stress.

She wants me to re-test B12 which is annoying coz my plan was to start supplementing if the appointment didn't go well, but now I don't know if I should wait. I really don't want to wait. Just this morning I completely blanked out in front of my boss (I had no recollection of procedure I did many times before).

At least GP agreed to test for intrinsic factor since I have multiple deficiencies.

All in all I'm feeling very disappointed :(

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A B12 result under 500 can produce changes in the spinal fluid leading to neurological symptoms. ( Sally Pacholok's Book - Could it Be B12 ? ) Here is the link that I posted above - scroll down to see the Neurological Signs and Symptoms of Low B12 ....

b12deficiency.info/signs-an...

youtube.com/watch?feature=p...

The second link is a presentation from Prof David Smith - Oxford University - about B12 and brain shrinkage. Perhaps your GP is not aware of such research. The video starts 4 minutes in but well worth watching. If left untreated some damage can be irreversible.

Testing for IF can be hit and miss too - and if negative does not mean you do not have PA.

Would you consider having testing done through Thyroid UK - to establish or rule out Hashimotos ? I do not agree with your GP about the anti-bodies - it is because they have so little understanding of auto-immune issues - its mostly self help.

thyroiduk.org.uk/tuk/testin...

You may wish to ask for the MMA and Homocysteine Tests from your GP - insist ! if levels are high in the range then it can suggest B12 deficiency in the cells. The blood test for B12 is only a guide as it contains both the bound and unbound B12 - and not all the B12 in your blood can reach the cells where it is needed.

Am sorry your GP was not more co-operative - but then they do not have training in vitamins and minerals. Looking at the PAS Forum here on HU - you can see how the lack of GP knowledge ruins peoples lives.

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Hi Marz

I outlined all of these details in my letter to GP (they received it a week before my appointment).

In the letter I did explained that the levels below 500 can lead to neurological symptoms. I supported it by giving example of David Smith, Professor Emeritus of Pharmacology at Oxford University in an interview with DailyMail for article: The 60p injection that can boost your flagging energy. In the interview he states: : “once levels fall below 500ng/l, the brain starts to deteriorate at twice the usual rate, making memory loss six times more likely”

I also explained that according to British Society for Haematology guidelines ": when there is strong suspicion of cobalamin deficiency and with serum cobalamin within reference range (>200ng/L) a patient should be checked for anti-intrinsic factor antibody and MMA, tHcy or HoloTC tests should be performed. Cobalamin treatment should be started while awaiting results of those tests. Cobalamin treatment is especially crucial if neurological symptoms are present"

I provided her with UK NEQAS Alert 'False normal B12 results and the risk of neurological damage' stating that: “In the event of any discordance between clinical findings of B12 deficiency and a normal B12 laboratory result, then treatment should not be delayed. Clinical findings might include possible pernicious anaemia or neuropathy including subacute combined degeneration of the cord. We recommend storing serum for further analysis including MMA, or holotranscobalamin and intrinsic factor antibody analysis, and treating the patient immediately with parenteral B12 treatment.”

I even gave her the NHS info on B12 testing issues: 'A particular drawback of testing vitamin B12 levels is that the current widely-used blood test only measures the total amount of vitamin B12 in your blood. This means it measures forms of vitamin B12 that are "active" and can be used by your body, as well as the "inactive" forms, which can't. If a significant amount of the vitamin B12 in your blood is "inactive", a blood test may show that you have normal B12 levels, even though your body cannot use much of it. There are some types of blood test that may help determine if the vitamin B12 in your blood can be used by your body, but these are not yet widely available'.

I did ask about the additional tests, she said no to MMA and Homocysteine. She belives that since my B12 levels are normal, they cannot be responsible for neurological symptoms. However, thinking about it now, she didnt consider what other condition could be responsible. Its not B12, problem solved! I cant believe it.

Now she wants to re-test B12, but I've been taking B100 for 2-3weeks which has 100mcg of B12. Even if I wait and not take the sublingual 1000mcg B12 that I purchased already, the new test may already be skewed by B100 - just proving her point that everything is fine.

As to antibodies I will have to go private I think, although money is an issue :(

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Oh my goodness I did not receive my notification just saw this post! I'm very saddened to read how your appointment went. If it all possible I would fire this doctor- find another. She may have a thyroid issue but everyoneof us is so different!

Hugs💞

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Be careful with selenium . It can be toxic and lead to baldness and even death if you have too much. It is not cleared by the kidneys. It's a metal.

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For the first time ever I recently had labs that included seleniumtesting. Mine was high. AlthoughI have supplemented he had been sometime since my last pill. My doctor was somewhat alarmed and tell me to back off supplementation because I can end up with glaucoma. At first I agreed but I feel so much better with it. It occurred to me that I eat a little red meatt but the chicken I do eat is probably is contributing to it

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Took the words right out of my mouth!

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Saw your question about weight loss and going gluten free.

I have now been GF just 15 months. Weight has not changed......but my size has!

My arms are so much thinner it's astonishing and still continuing to reduce. Hoping my legs follow suit! They have improved, but not as obviously yet

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Thanks SlowDragon, thats good to know. Glad to hear your size is improving. At the end of the day weight is just a number, its so much more important to feel good in your skin. May I ask why did you go GF? Do you have Hashi? I am still waiting for my antibody results...

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Yes Hashimoto's. More on my profile

Going gluten free has been a revelation, definitely improved conversion. Antibodies fallen at every test since

Now on T3 as well

Recent DIO2 gene test proved that I always was going to struggle converting.

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I just read your profile, what a journey. Im happy for you that you are now progressing, pitty it took so much time...

Im just starting to learn, discovered lots of deficiencies recently and started supplementing iron, vitC, vitD, magnesium, K2, selenium, B12, Bcomplex and probiotic. Slight improvement so far but not as much as I expected. Im waiting for my first ever antibodies and iodine results. Dont know whether adding T3 would help at all as my T4 is top of the range and T3 is 70% through the range. GP considering diagnosing fibromyalgia...

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