Autoimmune Conditions: May I ask if many on here... - Thyroid UK

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Autoimmune Conditions

Kitti1 profile image
11 Replies

May I ask if many on here suffer multiple autoimmune conditions. If so what came first, the hashis or something else. If it was hashis / hypo, at what stage did other problems occur, what were your symptoms ? Also do you feel there was something specific that may have triggered the start of another autoimmune condition. Is there anything you can suggest that may help avoid developing other autoimmune conditions ?

Very grateful for your thoughts and experiences

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Kitti1 profile image
Kitti1
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11 Replies

When my Graves was raging and I hadn't twigged that I needed check my bloods/see the endo/get back on the carbimazole I had alopecia areata and lost about a quarter of my hair on my head

After a couple of months on the antithyroids and beta blockers my hair (mostly) grew back

Saggyuk profile image
Saggyuk

Might not help you as think you're already trying this??

Had some niggly issues as child including stomach issues stunted growth etc but autoimmunity with regards to thyroid started in teens, diagnosed with an autoimmune sleep disorder, sjogrens and pompholyx in twenties. Shortly after turning 30 and having a baby, they just diagnosed me with diabetes (with pre-diabetes for some time) and consultant said looked like addisons or similar was forming as had patches of brown skin, very under range cortisol and would crash very badly if had anything that would normally require adrenals to kick in and needed to sleep immediately (arguments/fair rides). They put me forward for more tests but never got round to getting results or sorting this as both these issues reversed suddenly after going GF just at the same time. The sleep disorder and sjogrens disappeared also. Thyroid had pretty much died already so too late for that but issues I had since being a kid before the thyroid also cleared up so clearly gluten was the root cause in my case and consultants have agreed and tested it out :-)

Saggyuk profile image
Saggyuk in reply to Saggyuk

Oh the only temporary thing like tonsillitis that I had was whooping cough at 5 a little before stomach probs began but never really thought connected tbh. I was never susceptible to bugs as always seemed to have a hyper immune system. I was put on contraceptives for bad periods at 13/14 too but to be honest I had already stopped going to school so was already ill although never liked them and have never took since 17.

I grew up in a highly contaminated area with an exceptionally high cancer rate - even pets, I don't think this would have helped to be honest if anything although it doesn't change the fact that gluten triggers my immune system. Even the infant school I went to had to replace 10 metres of top soil twenty years after I attended and there's lots of hush testing and legal stuff going on about it today - you name it, that land had every single use and nasty chemical going on it throughout history and this was where we hung about and dug in the dirt and played in the water - eek :-/

I did hear another rumour about something although I don't think it holds any scientific basis or truth so never keep it in mind but actually I might post as a question through pure curiosity in a mo lol.

Saggyuk profile image
Saggyuk in reply to Saggyuk

Actually, I would add my stomach problems did seem to occur shortly after moving to said area at 5 lol :-)

UrsaP profile image
UrsaP

Hi Kitti1 I have heard that if you have one autoimmune good chance of developing others. And I'd suspect especially if Hypo not treated properly. I think I had problems throughout childhood, and adolescence (definitely through adolescence!) Goitres at 19 think antibodies at that point too. No meds. Hypo diagnosed at 29ish. I suspect I have other things going on too - adrenals struggle and I think possibly sjogrens, some signs but not diagnosed.

I can remember having 'tonsillitis' a lot and that was how 'stress' used to present itself. Had a really bad dose at about 12 yrs of age. Often wonder if that telling? (Night before wedding couldn't speak!! throat swollen and sore - was like a zombie on the day (could that be a get out clause do you think?...) Fainted on alter, that sort of thing)

I've always wondered if Tonsillitis/Glandular Fever is a trigger. (Think GF aggravated my son's problems 5 yrs ago) Though definitely signs of HypoT in previous years. GP just agreed to test him for FT3 and antibodies today... Whilst we need to know what is the underlying cause for him, I am hoping HypoT is ruled out.

Hattie007 profile image
Hattie007

Hi. I suffered with carpal tunnel and tendonitis since age 11 and ever since on and off. Diagnosed hashimotos 29 after having first child, then coeliac disease (almost by chance- suspect had had for years) age 35 and sarcoidosis age 37. How about you Kitti1?

Rapunzel profile image
Rapunzel

Hey Kitti

I've read on here like UrsaP that one auto immune is rarely your only little gift...

androgenic alopecia diagnosed in my late twenties bad.org.uk/shared/get-file.... Really ticked off, as my hair was my thing. Got over myself eventually when my Ma died and I was 46. I threw in the towel and resorted to hairpieces outdoors and a funky selection of chemo turbans indoors. Life sucks sometimes but there are worse conditions - hypo is one of them :(

UrsaP profile image
UrsaP in reply to Rapunzel

God Rapunzel Life is such a B****!

I'm thinking I have been struggling with Sjogrens for years, maybe this was my initial auto - but never diagnosed. I have had dry eye/ulcerated eye problems from around the same time as thyroid goitres started aged 19... 55 now and no one has ever even mentioned Sjogrens, despite an eye hospital file inches thick and all knew of thyroid issues??? Yet tongue too, dry as a bone....wake up in night with rough sandpaper tongue, even though constantly sip water during night to try to alleviate it...half an hour later, last night, tongue was stuck to roof of mouth! Have had this for years and have mentioned it numerous times. Never tested or treated for Sjogrens, other than eye drops. Thinking I am lucky. I did have a patch of alopecia some years ago -hairdresser spotted it. Luckily it did not develop and did grow back...I think...going for mirror....

Looking into it more now.

But fairly certain that one auto immune can lead to another and would guess poor treatment of one probably helps lead to others as our whole system struggles.

Rapunzel profile image
Rapunzel in reply to UrsaP

Hey Ursa

My treatment for alopecia was pretty sh*t too. There's me thinking it wasn't so bad, cue a shed load of junior medics poring over my scalp whilst the derm says, 'as you can see, Rap's hair loss is quite pronounced.' I was six months from my (first) wedding day. Good job, you tool! Well feck it, I looked gorgeous my hairdresser was the nuts and I had a mop of Titian curls all wound up with gypsophila.

This useless patronising d*rk gave me a bottle of what would become Regaine and poo poo'd me when I told him at a follow up that it appeared to make things worse. It was in its early stages of being used then and it has since been established that you do have a shed of hair when you start. I was never keen and stopped using it and I'm glad that I did. Wing and a prayer it was going to make a difference and like all of the so called treatments for AGA, any benefit is lost when you stop using it.

We just have to be bigger than our sh*tty conditions and find something else to say rather than my name's Rapunzel and I'm hypo, I guess. :)

Two. Just two doctors I've seen in my life who were any good. One's died (((Ellenor you are loved and remembered whenever I think of my Ma))) and the other's 170 miles away now :(

UrsaP profile image
UrsaP

How awful Rapunzel Your story reminds me that there is always someone worse off.

I've also only had two 'good' GP's that I recall. First family Dr who agreed my neck was enlarged, he didn't know what it was so would send me to someone who would. When I saw him again, over two years later, with same problem, he looked at the file and said 'oh yes they (specialist) couldn't make their bloody mind up!' I moved away shortly after. Suspect this chap has long gone now. The second, was not great, tried to fob me off no end of times, caught him out! But he did give me the space to work with Dr P 7 years ago, and allowed me to swap to T3 only, seeing it was working for me. Unfortunately he retired last year, whilst I was living away, looking after my mother.

Choice of GP currently stand at one who has no idea...cannot read test results and had no notion of T3 last Oct. And fairly certain she has no further knowledge now. Or other who is so thyroid negative, he rolls his eyes at the mention (though he did increase my T3 when I asked via repeat lately...maybe not all bad...but scathing -don't like seeing him, always feels like a battle!)

We may be Hypo's but we still have some fight left in us...we need to use ut wisely....

Maybe the time is right.

Francis1957 profile image
Francis1957

I have Type 1 Diabetes 1970, Hydradenitis Suppurativa 1977, Hashimoto's 1991 and Stiff Persons syndrome 1993, I am now experiencing stomach problems which could be Coeliac Disease as coeliac is more common with Diabetes Type 1 and Hashimoto's. In my opinion stress is the main factor

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