Why are autoimmune Thyroid problems treated dif... - Thyroid UK

Thyroid UK

137,936 members161,765 posts

Why are autoimmune Thyroid problems treated differently from others?

20 Replies

As far as I know (which admittedly isn't much) other autoimmune problems like Lupus, PBC etc are treated with steroids and immune suppressants to 'stop/delay the attack' but it's OK to let our Thryoids burn out/be surgically removed or RAI zapped (usually before any hormone replacement offered).

Or am I just barking (mad) up the wrong tree? J :D

Read more about...
20 Replies
justjaney profile image
justjaney

i agree spareribs? The amount of people i know whose had these cheap T4 tests done and they,ve come back negative is ridiculous? These doctors surely cant be that ignorant to not think that maybe they just might need another test doing (T3)//as not all these people can be imaging there symptoms , but the thing is is that for some reason these doctors just dont wanna listen? wonder why someone that chooses a proffession because they want to help ,(because surely thats what anyone would want to do when they become a doctor)then turns a deaf ear when they are being told by lots they think theres something seriously wrong with them ?Its got to be about money ....

or maybe i,m barklng up the wrong tree too :-D

janey

paul211 profile image
paul211 in reply to justjaney

deffo about money gp thinks the money comming from his pocket

Glynisrose profile image
Glynisrose

The answer is that most other auto-immune illnesses can take up A & E time whereas hypo doesn't.

nightingale-56 profile image
nightingale-56 in reply to Glynisrose

I took up a lot of A & E time just after i had my sub-total thyroidectomy in 1978. I was down there almost everyday with two young babies in tow, thinking I was dying and no-one was doing anything about it. Was just told there was nothing wrong and I was just tired because of the two babies. If only!

SamBonjela profile image
SamBonjela in reply to Glynisrose

Graves is autoimmune too and results in hyperthyroidism. It can result in thyroid storm, stroke, cardiac problems, broken bones from osteoperosis (debatable), so can take up A&E time.

In answer to the original question, I have wondered this myself. I think the answer is that it is an obvious and easy (from the medics perspective), whereas there is no such easy solution with lupus, ms, crohnes etc. - they cannot remove the affect bits of tissue.

They feel that treating the thyroid stops the problem, but don't recognise that it just creates another illness for the patient. They can get the numbers to come up right on the blood tests and they are satisfied they have done the job.

I am personally unhappy with the options of taking poison for 2+ years or the barbaric and crude solution of thyroid destruction/removal. I have spoken to my doctor about my desire to tackle my immune system rather than the overactive thyroid and they just tell me I'm stupid and I'm going to die or worse.

Having said that, I'm trying to tackle the autoimmunity aspect by being kind to my body and mind and seeing what will happen (currently cutting out cow milk products and wheat). I think 100 years from now people will be shocked at how patients with graves disease were treated.

SamBonjela profile image
SamBonjela in reply to SamBonjela

I forgot to do the bold HYPERTHYROID[/B]

SamBonjela profile image
SamBonjela in reply to SamBonjela

HYPERTHYROID

Jackie profile image
Jackie

Hi Well all my many autoimmune diseases are treated by specialists in this specific field, including of course my Hashi. ( endo) Now there is such a depth of knowledge anbout most diseases and there are specialists ,specialists ie a specific cardio deals with a specific heart problem , although knows quite a lot of cardio stuff in general. It is only by seeing the correct consultant does one get the correct treatment for a highly specialised condition.

Years ago there were no very specialised consultants. In fact people like a general surgeon did every thing from breasts to bottoms. Of course now, that would not mean we were getting the best treatment. it does pose a problem in so much you need to see the correct speciality as now no general physicians etc.

I do not know if that answers your question, I think it is just the best of a bad job!

Jackie

PinkNinja profile image
PinkNinja in reply to Jackie

You're right but unfortunately a lot of people don't ever get referred to the relevant specialist even when they ask :(

It does seem that thyroid is dismissed whereas RA, lupus etc get treated - that's if you can get a diagnosis in the first place...

Hope you're doing ok, Jackie :)

Jackie profile image
Jackie in reply to PinkNinja

Carolyn, Thanks . Coping. Except I just had a dreadful consultation with my Nephrologist, no advice, "You mange your drugs, care, well!" It probably did not help that I laughed at him trying to do my BP, out of practice now a consultant!

Yes, I agree , who to see ,and the correct person is a night mare. I find the best advice as always from my endo as such a wide range of knowledge with that speciality.It took me 6 cardios before I had the correct treatment, almost too late. Now, I have a policy if some one. unpleasant or useless,especially does not listen, dump them! No doc is better than a bad one.

Hope all well with you.

Love,

Jackie

SamBonjela profile image
SamBonjela in reply to Jackie

I understand breast and bottoms are still sometimes done by the same surgeons :)

Jackie profile image
Jackie in reply to SamBonjela

It depends really on the size of the hospital, the large teaching hospitals have lots of specialists ,specialists! , eg I have a specific Gall bladder surgeon, ( not a lot of use to me, as I cannot have the OP any way) but that is just an example. Of course, if one person is in a very specialised field, one can then hope he has done a lot especially with a surgeon, so be a good knife man. Does not always follow unfortunately!

Best wishes,

Jackie

SamBonjela profile image
SamBonjela in reply to Jackie

I was thinking more of plastic surgeons: youtube.com/watch?v=FxBF1xB...

Jackie profile image
Jackie in reply to SamBonjela

Hi Like it! Yes, they do loads of parts, I suppose I much like another!

Jackie

Trudes profile image
Trudes

Actually the reasons are pretty understandable. Firstly people with lupus are only treated with steroids and chemo/anti organ rejection therapy when there is major organ involvement. You can't treat kidney failure with a simple pill. But essentially when you have an underactive thyroid what is missing can be replaced by a pill. So maybe its to do with the actual affected organs - in lupus heart, kidneys, liver, lungs, brain and the largest one the skin - the humble thyroid is more easily treated?

helvella profile image
helvellaAdministratorThyroid UK

Obvious possible treatments which focus on the auto-immune aspects:

immuno-suppressives including gluocorticoids

plasmapheresis

The immunosuppressives tend to have long list of side-effects - even if the most appropriate agent is chosen. Short-term steroid treatment is often well-tolerated, but long-term is often a problem - sometimes severe. And you can end up wondering which effects are from the underlying disorder and which from the medicine.

Plasmapheresis can also have its dangers - as well as being expensive.

Trudes' point may well be right. The sum of side effects and dangers of treatments other than (or as well as) hormone replacement very likely explain keeping to the standard treatment. That current hormone replacement is so often handled poorly is not a reason to jump out of the frying pan!

There may be other substances and/or approaches which provide some benefits at less risk but their identification and safe use is still not so easy. We regularly see other things people try - selenium, iodine, zinc, herbal extracts, and on and on - whilst we read some positive reports, we see few substances that have changed from "something that might have helped a few people" into "something we all need to consider".

Anyone want to read some more:

thyroidmanager.org/chapter/...

Rod

auldreekie profile image
auldreekie

On a more general note, part of the problem it is the human condition that if you give something a name and further categories e.g. 'autoimmune thyroid disease' it is fixed! And there seems to be a general misunderstanding in the general public that because autoimmune has a 'handle' it is diagnosed and treated and fixed......well we all know how that goes.....

Also how many times have you heard someone say 'oh thyroid disease, over active or under'? If you say overactive they say of yes you are so full of energy you would have over active!! As thought it's a bluddy life style choice!

Opps rant over!

if autoimmune is attacking the thyroid, why don't they just take it out? Surely that would stop the attack and the constant up and downs and we could live happily ever after on one stable dose. Or is that just me wishing for too much?

SamBonjela profile image
SamBonjela in reply to

what??

Glynisrose profile image
Glynisrose

That would require doctors that think for themselves, hardly likely with the RCP and BTA breathing down their necks!!

You may also like...

Difference between autoimmune thyroid disease and non autoimmune

results said that this indicates I don't have an autoimmune thyroid problem. I had thyroglobulin...

Baby born with birth defects from non treated thyroid problems?

Why does my private thyroid test differ from nhs one?

Thyroid and other autoimmune conditios

little our GPS know about this condition I also have PBC and they don't know anything about that...

Autoimmune thyroiditis

I have been sufferring with autoimmune thyroiditis for fifteen years. None of the treatments have...