Am I right or am I wrong here? Little argument ... - Thyroid UK

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Am I right or am I wrong here? Little argument with someone on facebook

Hypo101 profile image
25 Replies

So was having a disagreement with a lady on facebook about hypo and hashimotos. I said that if you don't take thryoid hormone when you need it you will eventually die so will need meds. This lady disagrees with me and says that for hashimotos "MOST people don't need meds" and just changing diet and lifestyle will solve the issues. She kept accusing me of not knowing the difference between hyp and hashimotos and said they are 2 different things (which i get) but I tried to explain to her that by the time most people are dignosed with hashimotos they already have damage done to the thyroid so not taking meds is dangerous. In early stages of hashimotos you put in remission (even later stages) but that doesn't mean it always be that way or it's a cure

So basically what do you think of her claims that " most people with hashimotos don't need thyroid hormone supplement" and can just tinker with diet. Read a few articles saying that even in early stages of hashimotos taking thyroid hormome could slow down the progression

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Hypo101 profile image
Hypo101
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25 Replies
cjrsquared profile image
cjrsquared

It strikes me that someone is in denial. It is true that if hashimoto's is caught early enough and if ( and it is a big if) you can put it into remission with dietry changes you can slow done and delay destruction of your thyroid. The chances of being able to stop it completely are small. There is no research out there to identify people in the early stages of hashimoto's or what dietry interventions are the most helpful. The research on gluten free used small populations of patients but it was replicated which increases its validity. Most patients already have some permanent damage to their thyroid by the time they are diagnosed. I think your argument is correct.

Hypo101 profile image
Hypo101 in reply tocjrsquared

She also said that the damage tissues could "repair itself"/regrow so another reason for not needing meds. She blocked me so couldn't continue the discussion lol.

Need to edit that "many" as well. She actually said "most" people don't need meds and that on that group (it's thyroid group) they have 3 year olds with it.

joyce59 profile image
joyce59 in reply toHypo101

i have hashimotos which was undiagnosed for 13 years maybe more as TSH was already 10.9 one gp stopped my meds saying it had repaired but as a nurse myself having worked in ENT i knew this was unlikely. A week later i was so ill my daughter had to take me to A and E.

cjrsquared profile image
cjrsquared in reply toHypo101

Definetly delusional, I only hope she doesn't cause long term damage to herself or persuade other people to give up replacement without adequate monitoring and frequent blood tests. It is hard but everyone has to take responsibility for their own health and has the choice to make desicions that others deem wrong. The problem is when people become zealots and object to anyone having a different view to themselves. I have been impressed by this forum where there are many differing views but moderation and kindness seem to predominate. Long may it continue.

Neldine profile image
Neldine in reply toHypo101

Typical Facebook expert. Especially blocking you. Equivalent to the four year old stuffing their fingers in their ears. Don't let these "experts" faze you, only you know your situation, and how your disease has progressed. Best to you.

Kitten1978 profile image
Kitten1978

You are right. If she has Hashi and is trying to control it by diet only ...all I can say is "good luck" to her. She will need it...

in reply toKitten1978

It won't be long before she is on this forum seeking advice, if that's her opinion on Hashimotos.

Josiesmum profile image
Josiesmum

I watched the Hashimoto's Summit and most of the gurus on there talked about needing thyroid hormones along with dietary interventions and supplements.

SmallBlueThing profile image
SmallBlueThing in reply toJosiesmum

Maybe because they sell diet books and supplements?

Josiesmum profile image
Josiesmum in reply toSmallBlueThing

Dietary interventions and supplements can make a huge difference to health and quality of life.

Kitten1978 profile image
Kitten1978 in reply toJosiesmum

Dietary interventions and supplements in addition to thyroid hormones make sense.

Hypothyroidism caused by Hashimoto's thyroiditis is treated with thyroid hormone replacement agents such as levothyroxine, triiodothyronine or desiccated thyroid extract. A tablet taken once a day generally keeps the thyroid hormone levels normal. In most cases, the treatment needs to be taken for the rest of the patient's life. In the event that hypothyroidism is caused by Hashimoto's thyroiditis, it is recommended that the TSH levels be kept under 3.0.

Hypo101 profile image
Hypo101 in reply toFreelie_Wheelie_1983

I know that but she was saying that you don't need thyroid medication for hashimotos because hashimotos is not hypthyrodism. For hypthyrodism yes but for hashimotos (because hashis and hypo are two differentt things though one leads to the other) you can control it with diet and supplements.

That's what she was saying.

puncturedbicycle profile image
puncturedbicycle in reply toHypo101

Well that's kind of splitting hairs. I have Hashi's and uat, and I'd venture a guess that most people who have one have the other as well. I guess if you have antibodies and your tft is 'normal' then fair enough. No one 'has' to take meds.

I will say though that correcting all the uninformed bonkersness on the interwebs will prove to be a sisyphean task so choose your battles. We all come across crazies who are spouting potentially dangerous nonsense but beyond registering your disagreement Idk that there's any more to be done. Let being right be its own reward, :-)

shaws profile image
shawsAdministrator in reply toHypo101

Thyroid Antibodies in our blood mean that the thyroid gland is under attack and the person has an Autoimmune Thyroid Disease called "hashimoto's".

You can either let the antibodies continue to attack your thyroid gland and become hypothyroid, or you can begin levothyroxine or other thyroid hormones to try to 'nip things in the bud' as the past President of the BTA suggests as many doctors rely completely on the TSH before prescribing.

in reply toHypo101

I think she has done you a big favour by blocking you...you won't have to be subjected to her ignorance any more..lol x

BootsOn profile image
BootsOn in reply to

I often think people block you when they realise they've lost the discussion because they are wrong, and are not mature enough to back down and apologise.

in reply toBootsOn

Yep you have a point. It was the easy option for them. Their loss x

I think it's a complex question, because we (as in the human race) still don't know enough about the causes of auto-immune diseases in general and about our own genetic makeup and diet and how those two interact. By the time most of us are diagnosed with Hashimoto's it's been active for some time, and we're likely deficient in various vitamins/minerals and may have other auto-immune conditions as well. Unfortunately we don't have dials on our chests with all our biochemistry readily viewable! I'd absolutely love to be able to treat my Hashi's solely with diet. I accept that is unlikely, and once I get the go-ahead for Levo I won't be refusing it! However I will carry on researching and learning to find the best way forward, as must we all.

I'll also add Facebook... meh! :D

Kathyhandis profile image
Kathyhandis

I think she was giving out quite possibly dangerous advice.

radd profile image
radd

Hypo,

Knowing of a Hashimoto diagnosis early before the thyroid gland is too damaged gives scope to reduce antibodies and slow the progression. We read of people who have managed to halt the disease and encourage normal thyroid function so avoiding the need for hormone replacement. I believe this possible as diet plays a huge role in my bodies response to this auto immune condition but unfortunately my disease was too far progressed when I learnt of my diagnosis.

This approach is simply not recognised within the medical profession and the standard care for a Hashimoto’s patient is to wait until the immune system has destroyed enough thyroid tissue to classify them as hypothyroid and then prescibe thyroid hormone replacement.

Sadly with this approach, by the time we are diagnosed, too much damage has usually occurred, making reversal unlikely. If other symptoms are exhibited commonly associated with this condition, (depression or insulin resistance), additional drugs will be offered for these as well.

The underlying cause needs to be addressed whether we are on meds or not. Sometimes replacing the missing hormone does help suppress further hashi attacks but if the underlying cause isn’t addressed, the disease will be progressive.

The members on this forum are here through feeling very ill and unsupported, so in search of further answers but there is also a great many more people who are managing their Hashimotos Disease well and maybe a small number without thyroid hormone replacement. Depending on the severity of the disease, people may even be living well without knowing they have it, as antibodies are common for many conditions and it is the number that dictates the severity of the disease.

It would be hard to estimate how many manage their condition without thyroid hormone replacement as these people rarely come to light (unless they write a book) but I suspect due to the majority of societies misguided respect for our medical profession, there are not that many..

sulamaye profile image
sulamaye

Personally I think it's rubbish. If you have hashis it is far more likely that as time goes on and your thyroid gland is damaged further you will need increasing medication not less. Hashis is hypothyroid, it's just that not all hypo is hashis.

When I was first diagnosed in 1994 I went to a herbalist who put me on a thyroid supportive diet, the usual, and I stopped taking meds. It didn't work and my tsh went up and up and over the next twenty years I went from 25mcg to 175mcg and 20 mcg t3.

Now I'm on t3 only and also have m.e.

If she wants to treat her own thyroid like that let her, but she shouldn't be telling others to.

HilaryW profile image
HilaryW

As a nutritional therapist I would love to be able to manage my Hashimoto's with diet and lifestyle alone, but I agree with the comments above that, unfortunately, diagnosis often comes once damage has been done. My doctor ordered a scan of my thyroid before he started me on Armour about 12 years ago.. The nurse conducting the scan exclaimed in a somewhat horrified voice "Madame, (I'm in Belgium), how long have you had a thyroid condition!!!. I gathered from this that damage had been going on a considerable time. This was after seeking solutions for my health problems for 20 years from many doctors and alternative practitioners. There are tests that can be carried our to ascertain whether one has susceptibility to autoimmune conditions but it is unlikely that the majority of patients are going to do them and certainly not through the NHS. Therefore I take my thyroid medication (and am thankful that at the moment I can afford my Armour!) and try to optimize my health with diet and lifestyle

SilverAvocado profile image
SilverAvocado

There isn't such a big difference between Hashis and hypothyroid. Hypo is a larger, umbrella term that Hashis comes under. But the vast majority of hypothyroid is caused by Hashimotos. Although many people with it will not be told so clearly by their doctor, as doctors don't care about the cause.

Lilian15 profile image
Lilian15

Wasn't this the way of thinking of Oprah Winfrey and her health guru some years ago. You don't hear much about it now. No wonder doctors cringe when they hear patients have got advice from internet. But don't forget the modus operendi of trolls. They put the ball in the court and leave everyone else arguing. By the way I agree with you too although I cannot say I have had much e perience with Hashimoto

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