Hashimoto's: Why are most autoimmune symptoms f... - Thyroid UK

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Hashimoto's: Why are most autoimmune symptoms falsely attributed to Hypothyroidism by most Drs?(Hypothyroidism is just 1 of many symptoms).

wsenior profile image
8 Replies

It's time we and Dr's start focusing on the more sever side effects of Hashimoto's. The worst Hashimoto's symptoms don't go away once you've become euthyroid. Which most of us are since we take T3 T4 or both daily. Lazy Dr's always talk about upping/lowering our T3 or T4 dose, blood tests, etc....It's a dumb game to play. Upping your T4 by 25 mcg or adding in some T3 or going on T3 monotherapy, none of that takes away my worst symptoms.....and nothing Endo's prescribe ever makes my symptoms better. It's just a game to make small changes to get you to make dozens of follow-up-appointments. If they told the truth you wouldn't have any more need for them, except getting that piece of paper for the pharmacy. It's time they address the non-thyroid autoimmune effects that are devastating. They have nothing really to offer us, taking the right vitamin will not work either, neither will going on the AIP or Keto diet. The only thing that taking thyroid med's and vitamins help with is to not gain additional problems. I need help and most Endo's get me to waste my time and $ on them for years, with no results. For me they are: Fatigue with exercise (imagine how you would feel working out at the gym when you had the flu), Muscle Stiffness, Extreme Muscle soreness post exercise (and it's not because I'm out of shape), Unable to Focus my train of thought, Brain Fog, Irritability, and poor memory retention of short term memories, mental fatigue....and there are more. I am a man who used to work out nearly every day at a very high level. Now I feel fatigue warming up and after every exercise. I want the autoimmune effects to get treated, I've tried everything as far as vitamins, T3, and T4 go. The only thing taking Thyroid Med's and Vitamins will do is prevent you from falling into Hypothyroidism or other problems......how about addressing someone who eats healthy, is euthyroid, and exercises?....if Endo's don't want to do the hard work than just get your med's from any physician and make as few appointments as possible so as not to waste your time and money. Sure, you can go for another round of blood tests, muscle exams, etc....then circle back to your Endo, and not ever improve.

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radd profile image
radd

wsenior,

That’s because it’s sometimes not enough to just consider thyroid hormones levels and nutrient deficiencies, although these are of vital importance so usually addressed first.

Then if symptoms do not abate gut issues are usually investigated. Infections such as H-Pyroli, food intolerances, inadequate stomach acid levels, etc - 20% of thyroid hormone conversion takes place in the gut.

Then liver congestion - a load more thyroid hormone is converted in the liver which becomes clogged from methylation issues & impaired excretion of high levels of other hormone. A common consequence is elevated homocysteine that has been shown to dampen the expression of thyroid hormones at receptor sites.

Bodily inflammation from elevated antibodies, gut infections, chronic viral infection, Lyme disease, molds, etc, elevates the levels of cytokines which down regulates the 5’ deiodinase enzyme altering the effectiveness of thyroid meds & invites other AI conditions (read up how the deiodinases work.)

Sex hormones (many hypo males are commonly low in testosterone) -because no hormone works in isolation & thyroid hormones indirectly need an adequate amounts of all others. Also deficiencies or elevations risk altering the level of protein transport hormone carriers & this can bind excess thyroid hormone leaving it inactive (as oppossed to 'free' to become active).

Adrenal hormones such as cortisol & DHEA - needed for managing stress but also regulating blood sugar levels, etc - insulin resistance or hypoglycemia will impair the ability of T3 to enter our cells where it becomes active. Also long term elevated cortisol can eventually suppress pituitary function & thus TSH.

Mental health issues such as depression - Serotonin influences the HPT axis (hypothalamus-pituitary-thyroid) and T3 conversion, and deficiencies can down-regulate these functions.

And loads & loads more ..... If you have Hashi, a good read for further understanding of what can go wrong is 'The Root Cause' by Isabella Wentz or anything by Datis Kharrizan or Chris Kresser.

Sorry you are feeling so awful & hope you manage to find the cause soon.

Serendipitious profile image
Serendipitious in reply toradd

Yes this 👆🏼

Also, to reiterate the immune, gut, thyroid connection. If your immune system is constantly being stimulated this will affect thyroid function and so many other areas. A large part of the immune system is in our gut, our first line of defence and if that is compromised there can be a constant stimulation causing an inflammatory response. The body remains in defensive mode and our mitochondria most importantly that make our energy at the cellular level, switch from energy production to a more defensive mode. It’s also serves as a protective mechanism. Resulting in fatigue, lethargy, brain fog etc.

Conventional medicine doesn’t address the root cause for chronic health conditions and you’ll be waiting forever if you expect them to.

Hashihouseman profile image
Hashihouseman

Testosterone! Hypothyroidism and it’s treatment causes testosterone deficiency, unrecognised and untreated by all the doctors and endocrinologists I have consulted and there have been many. Even when I take blood tests for sex hormone profile together with thyroid function tests for years and prove the links the medical professionals still glaze over. The things that do work for me, to varying degrees, are keeping TSH as low as possible without suppressing it - this calms down the pituitary which otherwise chucks out too much prolactin as well as TSH. Men do not need much prolactin, we are not lactating! It screws up testosterone levels. But ….. keeping TSH down needs thyroid replacement by mouth, usually prescribed in too big a dose all at once - also abnormal… the body does not like this and metabolism of the thyroid hormone in this unphysiological pathway increases SHBG massively - this sucks up almost all your already possibly depleted testosterone so your blood test can show ok or even high testosterone which gives them reason not to treat for testosterone deficiency but free testosterone is hammered and can go too low to actually do anything. Taking a big boron supplement eg 10mg can offset this. Sage supplement helps lower prolactin. Soya supplement increases oestrogens which may seem counterintuitive but it’s the precursor to testosterone and even men need a minimum amount. Hypothyroidism plays havoc with all this. The symptoms of testosterone deficiency are similar to hypothyroidism and can make it feel like medication for that is making it actually worse, in fact it’s swapping hypothyroidism symptoms for TD symptoms! You need full male sex hormone profiles tested and monitored to see if any or all of this is going on. Only when I started to manage this was I able to sustain taking enough levothyroxine to stabilise my thyroid and it is actually much more challenging than the hypothyroidism itself! don’t let any medical professionals fob you off with the explanation (excuse) that testosterone naturally declines as we age, it does but not by as much as many general doctors suggest and by nowhere near as much as all this can do to it, it’s a cop out explanation for the doctors.

wsenior profile image
wsenior in reply toHashihouseman

Hey thanks for your reply. I was ranting and I'm not much of a writer....especially with a constantly tired mind.

I was taking testosterone enanthate (Testoviron) for a last few years but I developed some kind of muscle inflammation....almost like Rhabdomyolysis or Myositis....I'm just now thinking it might have been the Testosterone that was aggravating my muscles...I need to experiment and see.

6-months ago I and my wife decided to try and have kid's so I had to go off of it to see if my fertility would come back, so far it hasn't, even with taking Clomid. I had low-T probably caused by the Hashimoto's.

Testosterone helps me with mood, libido, and a little bit with weight management.

It doesn't seem to help with fatigue. It might also be causing my severe muscle stiffness/soreness (especially post exercise). It might be that the Testosterone aggravates the autoimmune effect (inflammation) in my muscles and joints. I need to do some experiments.

The fatigue, muscle stiffness/soreness, brain fog are the worst autoimmune symptoms for me. I just took a T shot 2 nights ago (been off it for 6-months), I will see if the muscle pains return. You are right though, when I'm off testosterone I have no libido, I'm highly emotional, more irritable. Testosterone helps with mood and libido, but doesn't seem help me with fatigue though. The severe muscle stiffness/soreness issue might be that T autoimmune inflammation gets aggravated somehow by the Testosterone Enanthate.....I will do a few more experiments and If I determine the T is bothering me, I will look for a different Testosterone, maybe I will try Cypionate? I have a better mood on Testosterone, vs off it. I have more libido, etc..

Truthfully, I'm thinking about getting a thyroidectomy just to see if my symptoms improve.

thyroid.org/patient-thyroid...

First things first.

I apologize if my writing was disorganized and hard to understand....so goes my mind.

elaine2447 profile image
elaine2447

Sorry you are feeling so rough, me too. I think it's actually worse for us living in the UK where nothing is done at all with Hashimotos. If we want proper thyroid blood tests, it has to be done privately. I can barely move these days the pain is so awful and sadly made a 1000 times worse since the covid shots. I am not against vax but certainly won't be taking the booster if on offer.

Batty1 profile image
Batty1

I can absolutely understand your frustration when nothing you do and no doctor you see can seem to make your issues better and It is very disheartening when you can no longer exercise the way you use to… I know I have come to teary terms with this myself I was once a fit person who taught fitness classes to now the person who lost all of this to thyroid disease and the very people you paid to help you are the ones who let you down over and over again … I realized in my own emotional and physical battle over these past 5 years that doctors aren’t miracle workers and medications can only do so much ….. I wished I understood what type of a nightmare adventure I was signing up for I might have paused for more then a second.

Vent away sometimes this is what it takes!

raglansleeve profile image
raglansleeve

Have you ever been prescribed enough T4 or T3? When you say that they up the doses and that doesn't help, did they only up them until you were in "normal" range? If you are still having symptoms, you may just need a higher dose of hormone. I had the major muscle issues and brain fog, and those were the last symptoms to disappear, and only did so once my dose was actually high enough. Do you have any blood results that can be posted, so that the experts on this site can see if they think your FT4 and FT3 are "optimal", rather than just in range for your doctors?

CapnM profile image
CapnM

good rant, I have landed on three unscientific conclusions

1) Medical community do not understand enough yet.

2) Taking levo has as many nasty side effects as the underlying disease

3) Levo being dolled out like candy to vast numbers of older people with raised TSH masks a sizeable subset of people dealing with Hashi and makes them statistical outliers....

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