So why are folk taking meds for Hashimotos?

I am not sure why meds are being used to treat hashi? I get it if the Thyroid has been damaged beyond repair. Autoimmune disease is the silent intruder here surely? And if that is true we cannot truly rid ourselves of this curse, can we?

We can only improve our inflation via diet, lifestyle and exercise. It comes as no surprise that meds work for a limited period until the thyroid is tipped past the point where the current dose is inadequate and further symptons immerge or previous ones re-appear.

We may kid ourselves that the meds are working, which they may be doing on the thyroid but what is lurking within, what untold damage is reaped by the the auto immune disease itself.

In fact it's quite terrifying if you consider this fact. It is certainly life altering. One question springs to mind here and that's what are the survival rates like for indivuals with an auto immune problem?

Sobering thought isn't it?

Mike

28 Replies

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  • Mike, Levothyroxine doesn't treat Hashimoto's, it replaces the low thyroid hormone caused by Hashi's damage to the thyroid.

    There is currently no treatment for most autoimmune diseases but progression can often be delayed, and further damage minimised, with replacement treatment.

    Hashimoto's targets thyroid and rarely attacks other organs as Graves often does. Hashimoto's will eventually atrophy the thyroid gland until it is unable to function, and without thyroid function there is no target for Hashimoto's, which will usually die out.

    The survival rate for Hashimoto's patients is as good as anyone else as long as low thyroid hormone is replaced before irreversible organ damage occurs.

  • Thank you clutter, it's kind of confusing the myriad of info out there. My symptoms have only really been evident since 7th June. Then they landed big time! Anxiety, panic attacks, a slow weak pulse (mine was low as a runner anyway). Then over night I went to tachycardic and accompanied by a good dose of being startled by noise and developing phobias. The palpitations are still around but the anxiety has calmed down since I gave up gluten. Oddly when I have a bit of a turn it is precceded by a ringing in the ears. On good days it is hardly audible..all very unsettling for a Hashi novice like me.

  • Mike, Hashi's and hypothyroid symptoms can brew for a long time and there suddenly comes a tipping point where everything seems to go haywire at once. It does improve when thyroid replacement is optimal but that can take up to a year. Being startled by sudden noises can be adrenal which often suffers when you become hypothyroid. Again, adrenals should improve when thyroid meds are right.

  • Thanks my TSH has sat at 4-4.5 since 2010. I know it's only the TSH but I guess it's subclincal hypothyroidism. When I was request to go for a retest after the limits were altered by the authorities was seen as above the normal range (at the same time I was feeling blood@ awful) my TSHhad suddenly changed to 2.5 which suggested I'd gone Hyper (symptoms correlated with this thought process in my mind anyway)!!

  • Mike, if you'd gone hyper TSH would have been <0.03. You could have *felt* hyper because when Hashi attacks the thyroid it kills off cells which dump hormone into the blood. The higher levels of hormone would reduce TSH.

    My symptoms were mostly hyper when I went to the GP who suspected Graves, but My TSH, FT4 & FT3 were unequivocally euthyroid with TPOab antibodies, so it can only have been the Hashi antibodies making me feel so ill. Later I was spiralling between hyper and hypo. GP and surgeon denied Hashi's cause symptoms but most Hashi patients know damn well it can, and often does.

  • Wow thank you Clutter. I did feel truly awful. I understand the TSH goes down as the Thyroxine goes up that's why you have to take a 1/4 dose for a bit, then 1/2 etc. I think I saw that in a Hope for Hashis video serios, which you may have put me onto.

  • Mike, I rarely watch/post videos so the credit belongs to someone else :)

  • Mike, like Clutter says levo doesn't treat Hashimoto's. Most people with symptoms and high antibodies will have some degree of irreversible tissue damage to the thyroid gland. This means they'll need levothyroxine or combination of levo/T3 or T3 only to replace the hormones that were produced when the thyroid gland was functioning normally. How much replacement hormone is needed is individual.

    Gluten free diet can help reduce antibodies to slow destruction down (apparently) but, and I say this in a nice way, people need to accept that they will need medication for life. It's s**t yes but we must stay positive.

    Having read some of your posts I can so relate to how you feel. I've had the worst time. I'm still a work in progress but am much, much better now. It's a soul destroying process and a one you must fight hard to get back to where you were.

  • Thanks for the reply, is your profile picture taken in Yorkshire or North Wales? Nice picture.

  • Thanks. It's actually Kirkstone Pass in the lakes.

  • As Clutter says, thyroid medications are replacement hormones, not medicines for the 'treatment' of Hashimoto's. With autoimmune hypothyroidism, it's the missing hormones that seriously affect quality of life and, if left un-replaced or under-replaced, survival rates can indeed be seriously affected.

    Until more is understood about autoimmune diseases, and preventative or curative solutions are discovered, we can only focus on replacing the hormones that our thyroid can no longer produce.

  • Thanks RedApple. This guy Dr J claims to be able to sort it out without meds! See what I mean about confusion?!

    youcanbeatthyroiddisorders....

    Watch the 2hr video it's pretty illuminating.

  • Oh yes, I've seen this chap's site before... and there are others like him... hoping to profit financially from sick people. Sorry but I don't subscribe to their protocols.

  • Hello Mike,

    As Clutter has explained thyroid meds are only given to replace low thyroid hormones whether the patient has Hashimotos or not .... the dose being determined by blood test results (although some of us choose to dose considering our symptoms as well...).

    Others have said your running is good as it is so uplifting for you and obviously that is true to an extent as endorphins are good for well being but I still maintain you are pushing yourself too hard and not allowing your body time to heal.

    Progression of Hashimotos can be delayed through good nutrition, addressing deficiencies and rest. Managing the antibody count is vital in order to reduce inflammation in the body and avoid a possible auto immune attack against further glands (diabetes), joints (rheumatoid arthritis), organs (autoimmune hepatitis), etc.

    As your antibody levels decrease you will feel better and may be able to run again in future but for now you need to nurture your body to improve your poor compromised immune system. Looking at your previous posts you seem to be experiencing more symptoms.

    Flower

  • Hi Flower, you did tell me not to run! I've had more of a fast walk by my usual standards I was merely running at just over 8 minute mile pace, which is pretty slow for me. I'm only jogging for 18 - 30 minutes 3 x a week. I've given up good italian coffee, cake, oats, baked beans, sweet corn, earl grey / english breakfast,, chorley cakes to name but a few pleasures and I haven't felt the wind in my face amid a good sweat since June. It make me happy to plod along in my trainers. I would sooner drop like a stone doing somehing I love than sit indoors being miserable! Thanks for your help.

  • Mike,

    A thyroid problem can not be detected by TSH alone.

    Creatinine is a normal byproduct of muscle metabolism that the kidneys excrete. As you are a runner, your muscle metabolism will be high. Thyroid hormone (when you have enough...) provides energy to every organ in the body, including the kidneys.

    With insufficient levels of thyroid hormone, a hypothyroid person's kidneys cannot perform at a normal rate. This leads to a decreased glomerular filtration rate (GFR) and reduced clearance of creatinine, so creatinine levels start to rise.

    When I raised my thyroid hormones through hormone replacement ....my creative level reduced and frothy urine disappeared.

    Flower

    quora.com/Why-is-creatinine...

  • Great explanation thank you. :)

  • OR... do you know something we Don't know? Do you know people that are taking something other than thyroid hormone replacement?

    The theory is, that if you start treatment with hormone replacement early on - especially if the TSH is allowed to be suppressed - the antibodies will reduce and the gland will be better preserved. Of course, you'll never be able to come of the thyroid hormone replacement whilst you still have Hashi's antibodies, but imagine one day they find a cure!

    Of course, it will be too late for me, my gland has been consumed! But then, I've had it since I was a small child, and wasn't diagnosed until I was 55. :) I do so love medical science! And doctors. :) lol

    Anyway, that's the best we can do, as things stand. But, hope springs eternal! You never know what's just around the corner, do you.

    'We can only improve our inflation via diet, lifestyle and exercise. It comes as no surprise that meds work for a limited period until the thyroid is tipped past the point where the current dose is inadequate and further symptons immerge or previous ones re-appear.'

    I'm not quite sure what you're getting at here... You might be able to improve your 'inflation' (?) with diet - although that doesn't work for everybody - but I certainly wouldn't try to improve it with exercise! Not whilst you have low T3, anyway, because exercise uses up T3, and will leave you worse off, rather than better.

    What do you mean that 'meds work for a limited period'? As the gland is slowly destroyed, 'meds' (thyroid hormone replacement) should be slowly increased. Of course the same dose won't work for ever. But it's not that the Levo, or whatever, stops working, it's just that you need more of it.

    You really are very down at the moment, aren't you. But I think that's very much because you Don't really understand what's going on. I think you need to learn more about the thyroid, and what it does, and how to treat it. So that you feel more in control. :)

    As for survival rates, well, I've had it most of my life. It has destroyed my gland because it wasn't caught in time. But I'm 70, and still alive and kicking! And no intention of throwing in the towel any time soon!!!

    Take care, grey

  • Hi Grey, I'm not too down really. It's only 10 days since my TPO ab result of 491. So it's early days and I guess what I was trying to say was that I note from some poor devils on here the horrendous time they have messing about with their meds and live in abject misery. Or it seems like that. Yes I'm very new to all this but I have read that your Thyroid is destroyed eventually and that it can (Well according to Dr Johnson) attack other body organs.

    I've yet to have Hashi confirmed (I have my first endo appointment tomorrow) so I will know more then. Having emailed Dr J and having had a reply based on my TSH, T4 and T3, he suggested that he'd be surprised if I wasn't auto ummune Hashi and the frothy urine suggests that it was attacking my renal system too. Dr J has Hashi and has overcome it without meds.

    I'm gradually getting use to my new condition and as I was hospitalised with my symptoms for 17 days and have only been out of hospital 4 weeks, Ive made some progress just with my diet.

    My Mam is 75 and had thyroid issues since 1967!

    Thanks for your reply.

  • Well, here's hoping Dr J is one of those doctors who knows what he's talking about!

    The reason some people are living in abject misery is more because of abject doctors than the disease itself. If you have a knowledgeable doctor, you stand a much better chance of living a normal life. Yes, it does destroy the gland - as I said, it's destroyed mine. But that's not the end of the world.

    Let us know how you get on with Dr J. :)

  • I'm not suggesting Dr J is going to cure my ills GG, however I adopted some of the advice heeded and my symptoms have become tolerable. I have approached him for advice and he answers emails free of charge. I don't think the distance thing will work, but as an engineer I sense a degree of logic in what he preaches. I'm also thinking of using a uk based nutritional therapist to try and establish cross reactive foods, gut health etc. I thought I'd get a scientific approach to my diet and gut health.

  • No, Mike, because there is no cure. I did understand what you were saying. :)

  • I have only been diagnosed since April 2013. Previous blood tests going back to 2006 show my TSH rising to levels now considered above range. My antibodies were 350 which is defiantly Hashi's and I am due another antibody result in a few weeks from last Friday's blood test.

    I really do not think my Hashi's is yet under control as my TSH rose at my last blood test. I get Hashi's swings where I have periods of very upset tummies but can walk and have some energy. Other times I am back to falling asleep mid conversation in terrible pain and struggle to walk. Everything is a complete struggle. They have now done tests for pituitary tumours as my TSH and fT4 levels rose.

    Don't feel you are going to be A1 feeling better on Levo. Because we are often left so long before diagnosis it can take forever to be back on track and feeling half way normal.

    Whilst it is true an autoimmune disease such as Hashi's can bring other autoimmune friends with it over time, it is not a guarantee. As the thyroid controls hormones it is in every cell in your body, there will be times when the set amount you take will be not enough to function correctly and as the thyroid is wholly or partially destroyed, it cannot produce extra to cope. Women particularly are prone to these sorts of swings at certain times of the month. The body needs to gather more thyroxine than you have spare for certain functions and will rob cells of the Levo for a duration, causing pain, nerves problems, tiredness, et al.

    I have often wondered and worried about my future and how ill I may or may not get. It isn't really worth it. Whilst it is scary it is no more scary than anything else in life. I do what I can at my own speed. I would dearly love to be on NDT or be cured and have my body in perfect balance, but maybe we have a small glimmer of luck on our sides.

    We need constant blood tests. All sorts can be picked up early from blood tests. "Healthy" people are not watching blood pressure, cholesterol, lipids, glucose, and liver function. We are. Surely this means we are actually more likely to have early anomalies picked up and treated earlier? Plus we can see when our bodies are doing okay.

    Sorry this is a long post but I have felt the same, desperate for a cure, desperate to feel well, scared of the future of my health. You are not alone. Think of the positives; at least we know why we feel rubbish sometimes!

  • This is an interesting thread - thanks to Clutter and other admins for helping me to understand a bit more about the thyroid and Hashimoto's.

    The trouble is that learning more about autoimmunity takes such a lot of time up so at the end of the day I have found that I walk a tight rope now and stay on it by doing my best re diet, regular exercise and fresh air and taking my Levo. I want to keep my intellectual energies for creative endeavours and earning a living so the basics explained in this straightforward way are always helpful.

    I've fallen off my tight rope a lot this year but I know that watching videos and subscribing to any one person's theories isn't the answer for me. The answer is in fine tuning what I can do for myself or using my common sense. So common sense tells me that jogging round our new garden on thick grass will help warm me up and get my endorphins going each day without harming my joints unduly or stressing out my adrenals - but I don't do too much - an extra lap every few days and some gentle yoga behind the washing line first. I have conquered my RA symptoms this way for the time being. I rarely eat or drink anything refined or that contains wheat, dairy or caffeine. I'm tapering off steroids slowly but surely too. Tomorrow is another day but having a very basic understanding of how the immune system works is also helpful.

  • Twitchy do you eat fruit? I am worried that I eat too much ~ 5 pieces a day as well as veg. The only dairy I eat is Greek Yogurt as I've read that its okay and mixed with honey and summer fruit berries for breakfast doesn't cause flare ups. Thanks for your reply.

  • Mike apart from wheat, refined sugars and caffeine I eat a bit of everything. I just don't think it's worth getting too paranoid unless you have Coeliacs or are diabetic or have a recognisable food intollerence. I think a healthy balanced diet is the best option - if I crave something sweet I will have a green & black's hot chocolate with almond milk or some berries and nuts or an apple. I just don't believe you can go far wrong with a balanced diet of wholesome foods. Life is too short to spend it worrying - says a woman who's blood pressure is too high and who has had five hospital admissions this year!!

  • Hi Mike

    I'm also very interested in the autoimmune side of things. I have oral lichen planus which attacks the skin inside the mouth, and hashimoto's. As I've already had 2 autoimmune diseases I do worry about the possibility of getting more.

    The more research I do the more I come across the idea that all autoimmune diseases begin with ill health in the gut - particularly with 'leaky gut'. As you do seem to be already very tuned in to nutritional approaches it might be worth checking out the GAPS or SCD diets - if you google them you'll find tons of info. I'm currently considering doing the SCD (specific carbohydrate diet) but it takes a bit of discipline, a love of cooking and some forward planning.

    Low dose naltrexone is another thing that may be worth checking out as it's particularly aimed at treating the underlying autoimmunity and normalising the immune system. I'm waiting for some to be delivered at the moment and am going to try it and see what happens.

    If our thyroid hormones are low then it's important to replace them and do what we need to do right now to look after our whole body, and to accept that it might be a long-term thing. I had a real psychological issue with the concept of being on a medicine for life from my 30s, it didn't fit with my alternative healthy sort of self image. I've accepted that and moved on but it doesn't stop me wanting to do what I can to solve the underlying autoimmune issues.

    Best wishes, I hope you feel better asap.

  • fantastic reply skyblue! I'll get googling GAPS and SCD lovely! Thank you. I relalise that whilst drugs will ultimately be a path I have to follow it, my initial goal is totackle the TPOab and if my condition doesn't get any worse I'll stay un medicated until I cannot tolerate what Hashi trows at me! As you say, coming to terms with ones situation is the first hurdle, there after it is about not looking too far ahead.

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