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Thyroid UK
91,917 members106,182 posts

Can someone help my sister?

Just looking for some opinions here. I've been on Levi 50mcgs since Nov last year after being told my doctor that even though my thyroid was in range my anti bodies were 1000 I was told anything over 100 is bad and it was inevitable that I would end up hypo over time.

She referred me to an endocrinologist who told her that even though my thyroid antibodies were high, they only carry a "1-3% chance of destroying the thyroid to the point of causing me to have hypo". I never met with him, this was all done through correspondence between the doctors. Their decision was to take me off of the Levi completely and I now only have an annual thyroid blood test.

I'm not disputing their decision but it seems to be in contradiction to everything I've read about thyroid anti-bodies!?

Last blood test I had my anti-body level had dropped but was still at 548. Seems a bit weird to me because my doctor at the time was concerned they were still high but now she's more or less washed her hands of it all because they've told her it's ok to have them at that level?! I don't understand that! If that's true, then why does the the blood test have a marker level at all for them if they carry such a small threat to harming your thyroid?

A long ranty post and as I said I'm willing to accept their diagnosis but it's just so strange as it's almost like everyone has a huge difference in opinions about this stuff.

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That facebook group is closed off, hostile and dictatorial.

One of the statements on the main page:

"One of the key foundations of this group is adapting a gluten, grain, dairy, soy and corn free lifestyle, as this is our first step to achieving optimal health. While members are not required to be gluten and grain free to join or participate, this is not a topic up for debate and/or argument, period. We have a very strict protocol that we follow that is proven and that works and we are a straight-forward group that does not sugar coat."

(!!!!???) 😱😮😒

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This forum operates under its own guidelines.

Whilst every day we see mentions and links to other thyroid resources (including mentioning facebook and other forums), your only posts/responses so far have been to point people at a facebook forum. And appearing to promote the group with what reads like advertising copy.

healthunlocked.com/api/redi...

23. Do not solicit members to other websites or forums for your own purposes either via posts or the messages system.

healthunlocked.com/thyroidu...

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I have been on this forum for over 6 years and with over 76,000 members the combined knowledge is amazing. Not veryone wants to be on FB. Am wondering why you have joined this forum ?

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This forum operates under its own guidelines.

Whilst every day we see mentions and links to other thyroid resources (including mentioning facebook and other forums), your only posts/responses so far have been to point people at a facebook forum. And appearing to promote the group with what reads like advertising copy.

healthunlocked.com/api/redi...

23. Do not solicit members to other websites or forums for your own purposes either via posts or the messages system.

healthunlocked.com/thyroidu...

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I’d want to get the antibodies as under control as possible and I understood they do go on to destroy the thyroid in fact they are destroying yours this very minute. The thyroxine helps reduce their severity but many of our endocrinologists seem to be practicing torture not medicine or have no real understanding of the autoimmune nature of the disorder. Your doctor was right to be concerned and should not have been swayed by an endocrinologist to whom I would not give the time of day. I would not accept his diagnosis and would ask for a second opinion but make sure you get someone from the list thyroid uk admin hold.

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90% of hypothyroid folk have anitbodies. They destroy you thyroid and so you will need Levo and in fact they shouldn't have taken it away from you. I went on a Gluten free diet and it helped a lot but you need blood tests to show TSH, T4 and T3 and also iron, ferritin, folate and Vit B12 and Vit D are at good/optimal levels. I use Medichecks they have offers on a Thursday you can get a full thyroid and vits (11 tests for £79 when on offer) a finger prick test that is easy to do at home. Your endo is useless and ill educated about thyroid not doing you any favours. Your GP appears a bit more on the ball and should have put you back on levo.You need thyroid levels tested evry 4-6 weeks and dosage increases until TSH is 1 or less and your symptoms have improved.

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This has happened to me too...slightly different story though, I was diagnosed a year and a half ago with Hashimoto’s my antibodies were at 1300 I don’t understand all the numbers really, at the time I was prescribed 50mg of Thyroxine stupidly I never took it as I have very bad anxiety and I got anxious about the medication I was then prescribed 25mg to ease my mind as my anxiety was mainly to do with side affects I never took that either.... now a year and a half down the line I’m doing CBT and one aim of this was to overcome the anxiety about the medication as I still have all the symptoms plus some and I really wanted to take the medication to help myself, I just went to get my latest result my TSH was 5.48 or thereabouts and my T4 12.8 I was told they don’t re-test antibodies as they’ll always be high but 2 doctors my own and then one I sought for a second opinion both said don’t worry about trying to take the Thyroxine it’s psychological and to carry on with my CBT.... I just sat there crying and saying if it’s psychological why do I always feel so tired they both dismissed me.... now I feel like I’m back to square one I feel like I shouldn’t of bothered with the CBT now as the main point of it was to overcome anxieties about taking the medication... I’m so frustrated at myself really for not being brave enough to take the Thyroxine in the first place or are the doctors right and it’s purely psychological

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I thought all the studies about CBT had been "faked" and it has been shown that it doesn't work - even if it does, why would anyone want to be brainwashed? My friend died after having CBT and progressive exercise (or whatever it's called). She was told her pain wasn't real - she had a twisted ruptured gut and died. Anxiety is a symptom of hypo.

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CBT has nothing to do with brain washing and can be extremely hellpful in resolving anxiety .A better solution for some than drugs.

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So why did Oliver James, a prominent psychologist say it was a scam? And europepmc.org/abstract/med/... and meaction.net/2016/08/18/ahr... and even those who like it say it only lasts 6 months - " years. But it's nearly as cheap as chips, so, like levo, it's the treatment of choice. Changing the way you think so that you believe that you are not physically ill is brainwashing in my mind - no different from a religious cult.

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No idea ,but google him and you will find some critics of his ideas.

A big issue in psychology was and may still be was determining whether hereditary or environmentnwas morenimportant.James appears to be on the environment side .J.B.S Haldane showed that both were important.

I can say it worked for my wife many years ago and it was not cheap with a private psychologist. Nor is it about convincing someone who is physically ill that they are not. It is about changing the way that you think about what is causing your anxiety or depression such as relationships.

Of course if the cause of anxiety or depression is physical such as thyroid then it will not be appropiate.

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The need for thyroid medication is NOT PSYCHOLOGICAL. thyroid illness is a physical illness and the need to replace the lack of hormones an undesputed fact amoug sane mebers of the public and most normal members of the medical profession. Have you over come your anxiety with this CBT. Your TSh is high enough that most doctors would treat, you antibodies indicate treament would help, your T4 is rock bottom. Both your tiredness and anxiety could well be caused by lack of thyroid threatment and you are not very well physically.

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Thank you for the response.... I have felt like I’m going mad the last day or so.... I do still have the 25mg I was prescribed sat here at home I am tempted to start taking it to see if I start to feel better then return to the doctor to plead my case again

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taking 25mg of thyroid hormone is notgoing todo you any harm but dont expect it to make you feel suddenly much better either(although you might). Thyroid treatment is can take along time to get to theright dose and for peopleto feel much better but it is worth every frustaration and expense to get your life back.The approprate treatment is too start at 25mg and for your doctors totake bloods and gradually increase untill you are symptom free which is often but not always when TSH is below one. Levo workd well for the vast magority of people but a lot of people on ths forum find they need some T3 as well, fingers crossed that wont be you as it can be abitof a bettle to get prescribed or as I do self treat as availability can vary

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Dear Carrie97:

Things are not always clear-cut as they supposed to be. I am going to give my opinion, nothing else.

First, our immunity varies according to our gut permeability: our gut permeability varies according to the exposure to fructose and galactose-mainly from milk drinking and cheese with carbohydrates-.

Second, If you eat sugar-glucose+fructose- or fruit or drink milk, your gut permeability will be increased and so your autoimmunity. That's the explanation of your blood test changes.

Third, If you want to be fine and thyroid disease/free, you should check your eaten patterns.

That's my opinion!!

Ismael.

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There's some confusion about the 1% - 3% figure. It's not a number I recognise but I think they are referring to the incidence of hypothyroidism in patients with TPO antibodies. Incidence is the chances of hypothyroidism developing within 12 months, not the long term chances. As someone with high antibodies you are much more likely to develop autoimmune primary hypothyroidism. In your case the chances are higher still because of the very high antibody count.

If you are not experiencing symptoms of hypothyroidism you are better off not taking levothyroxine, you own thyroid can modulate your hormone levels much better than any form of thyroid tablet. If you start to develop symptoms, or your TSH goes high (above 10.0?) or fT4 goes low then levothyroxine is needed. There is a good chance you will develop hypothryoidism but it's not certain. Antibody levels fluctuate and usually eventually come down. If you are well at the moment it's just a question of keeping an eye on your condition.

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Thankyou Jimh111. I had never heard this before and was thinking endos had reached an all time bullshit low it is reassuring to know there is some basis for this statistic.

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Dear Carrie,

I have never heard this idea that only 3% of people with high antibodies become hypothyroid. I am not fan of endos and Idont like the sound of the one you are having dictate your treatment. I would feel abit inclined to write to this endo (keeping a copy) and say that you have an interest in thyroid health and could he please send you a copy of the reseach stating this 3% codswallop.

It is a shame that your GP got him involved. It means that you GPhas had to stop quite reasonable treatment and does not feel able to precribed against the dictates ofa so called expert.

It might be worth you getting an organisation like health watch involved to advocate or paying for a second opinion from out list of more thyroid freindly doctors which yoy can obtain via an email address on website.

I presume you are not feeling well or the whole lack of treatment would not bother too much.Can you write another post or post this post with blood results and symptoms.

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I don't know where that statistic comes from. My understanding is nearly 1% of the population have thyroid issues, so if 1% of those with antibodies go on to develop thyroid issues, they're basically saying everyone has antibodies, and antibodies are irrelevant. My logic could be off there, but that's what it sounds like to me...

It could be worth reading more into Hashimotos - Izabella Wentz has some good books. I discovered I have antibodies (not as high as yours), but it's not yet destroyed my thyroid. I'm in the middle of doing the Thyroid Protocol with a nutritionist. I'm following an auto-immune paleo diet to remove trigger foods, and taking supplements to heal my gut and address deficiencies.

If there's anything you can do to reduce antibodies, you're as well trying it now, while you have the chance to limit the damage.

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Try Epsom salts.

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Get Dr Peatfield’s book on. Amazon.

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If you want to wade through this document it gives some statistics. onlinelibrary.wiley.com/doi...

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Functional doctors who are often the best at treating the thyroid consider that TPOAb test should be below 30 to be good. The range is often around <60. You can get the antibodies down by dropping dairy and gluten out completely. They start falling at reasonably nice speed. When there's hypothyroidism, one should always check for the antibodies too (which yous has). If there are antibodies ie. Hashimoto's, a doctor needs to look into gut health (for gut permeability, SIBO, yeast...) and diet to fix these so that the antibodies can go down. When the antibodies go down, there is a chance for the thyroid to recover as long as the antibodies are kept down. Sometimes dairy or gluten can be reintroduced later in the diet if there is no allergy. In this case I would keep a good eye on the antibodies. This is how I've been treated and I'm starting to be pretty good now. No medications. Still a small amount of symptoms, but all of them getting better and better.

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