Autoimmune diseases

[Piixxiiee]

I have underactive thyroid and daughter has coeliac disease. Any idea if we're at high risk?

[Eloisedublin123]

My husband is on an immuno suppressant drug for arthritis- embrel - I wonder if he should ask his consultant if he should keep taking it at the moment.

[mummylondon16]

most people who are told by doctors they have underactive thyroid actually have the autoimmune disease hashimotos ( the reason doctors don’t tend to see this as relevant is that the nhs treats both autoimmune thyroid disease and normal sluggish thyroid with levothyroxine therefore don’t believe that you can tackle the autoimmune side of things with mainstream medicine).
I know many people, family and friends, who are told they have “underactive thyroid” and given levothyroxine, and their bloods are “ normal” when in fact they are tired, overweight, puffy faces, thinning hair, IBS etcetcetc. i was the same and only through 5 years of research, private medication and significant amount of determination have i got on top of the science in this area.
very often coealic and hashimotos are linked so i would be interested to know if you have hashimotos?
Anyway the point in my rant is that people like to see “underactive thyroid” as a simple and easy disease, when in fact it’s often not. I have been lucky that i’ve been able to tackle mine and get onto NdT/t3 medication which enables me to care for my parents while all this is going on. but for those who aren’t optimally medicated or who have complex underlying issues with their immune disease covid 19 could lead to serious reactions or worsening of the condition after wards.
i use health unlocked thyroid uk forum there are lots on there who have similar issues and some great advice too

[MCTD]

The British Society for Rheumatology have quite a lot of useful CV info online, but I second PP's recommendation of seeking specific advice from consultants/HCPs who know the clinical history.

Endofmytether2020 I have mixed connective tissue disease too. Do you have any respiratory complications? I have Sjogrens which has affected my lungs (ironically just getting over something that may have been pneumonia rather than CV, but who knows as I luckily wasn't hospitalised and therefore wasn't tested). I am on the shielding list, I received a letter out of the blue last week - I actually didn't think I would be and it was quite a hard shock. I assume it is my lungs that are the issue as I'm not on immune suppressants/high steroid dosage atm.

It is very scary, I assumed a few weeks ago when I was very poorly that I actually had CV but now I think maybe it wasn't CV and was just pneumonia following a bad chest infection. Also had a few bouts of pleurisy in the last year which hasn't helped. The uncertainty of the future generally and the worry for what will happen if I catch it, is bad enough - getting the shielding letter and knowing I can't leave the house for three months has tipped me over the edge a bit this week I think!

[Nostradamuswept]

List of hr conditions here

[CatherineOfAragonsPomegranate]

I have hashimotos, also very crappily treated on NHS. And it is a disgrace and I wish to god it was more known about just how badly it is 'treated' per standard uk protocol. I have been and am currently going through hell.

As PP on the levothyroxine and undertreated. My thyroid is very inflamed my whole face, neck and chest goes red as a beetroot and I have loads of throat pain due to my body attacking the thyroid but this is not treated as say inflammation from any other autoimmune disease would be. TSH 5 but that's all good according to doctors, despite me having symptoms of weight gain, almost no hair left, puffy face, chronic fatigue 'fibromyalgia' etc etc. I do not believe GPs should be treating thyroid disorders. They DO NOT have the knowledge necessary to do so if you do not respond to levothyroxine, bar a few who make it their special mission to investigate. Unfortunately NDT makes me worse. So no luck for me.

Anyway rant aside, I subscribe to the view that an autoimmune disease usually signals an over reactive immune system, so I do not think it necessarily true that you will suffer more in terms of fighting off the illness itself. The extra energy involved though may mean a longer recovery due to sluggish metabolism.

I strongly believe I have had it and got rid of it but am still shattered way past the 14 day threshold and still having shortness of breath. Also have Asthma and a crap peak flow at best of times so that doesn't help. But I have heard the same from others without my underlying illnesses.

[CrunchyCarrot]

Completely agree with you Catherine and mummylondon, the treatment of underactive thyroid is a disgrace. Don't get me started, LOL. It is seen as a simple to treat disease (one pill daily for the rest of your life, sorted). It is so NOT like that at all. Many of us struggle and for some, we don't convert the T4 in Levothyroxine and so end up ill. I take T3 only now, and that is helping, but I am still not well due to associated conditions of histamine intolerance and oxalate issues.

[SirVixofVixHall]

I have Hashimoto’s and coeliac. I have been told that I could be at increased risk due to Coeliac disease, as about a third of Coeliacs have spleen disfunction which puts them at risk of pneumonia.
You can’t know if you are in that third or not, so you have to assume that you are .

[SirVixofVixHall]

Oh and it took me ten years to get treated for my thyroid, and eight years later I have still never seen a consultant or endocrinologist. My friend in a different town was sent to an endo from the off.

[LavenderLilacTree]

OP I am guessing you aren't a member of CoeliacUK or you would have seen all their advice on COVID-19.
I won't repeat it in here as you can look it up yourself - it's definitely worth reading.
As a side point it's really worth joining CoeliacUK - it's a great charity to support and it really needs help at the moment financially. All the research they fund is under threat, along with the support they offer, especially to the newly diagnosed.
I don't know how many charities you already give to but PLEASE consider making CoeliacUK one of them, especially at the present time.

[Bagelsandbrie]

@Rollergirl11 join the UK Addison’s support group on Facebook (if you search UK Addison’s disease in groups it should come up, about 4.5k members). It’s really useful as it’s such a rare condition. I have Addison’s, asthma, anaemia and kidney issues (and hypothyroidism). I haven’t received a letter telling me to shield however many within the group have - they all have extra conditions as well as the Addisons. It seems Addison’s on it’s own doesn’t mean you’re at greater risk but just that if you do get it it can be harder to manage.

I am sure I’ve already had it. Was very unwell for 2.5 weeks and now on the mend. Had awful high fever and then chest tightness. Oddly enough didn’t go into a full blown cough but did feel generally awful. Spoke to 111 who said to presume Covid 19 and managed by triple dosing my steroids- usual sick day rules of double wasn’t at all enough- again lots of links and information about this in the Facebook group.

[Lillyhatesjaz]

I also have addisons and I haven't been sent a shielding letter. I was sent a letter from my consultant reminding me of the sick day rules and telling me to make sure I have an emergency injection. I didn't know about the Facebook group I will be looking that up.

[Bagelsandbrie]

Link here hopefully if it works ..

www.facebook.com/groups/175948922471395/?ref=share

[Lillyhatesjaz]

Thank you

[baldisbeautiful]

Have Addison's too. Haven't been out for 4 weeks now, WFH and DH been doing the shopping. It's still a risk with him going to the supermarket but it's the best we can do for now. Likely to lose jobs (both of us) quite soon so that will be a challenge as we need income from both of us and that's hard to do if you're trying to stay indoors and safe!

[JulietTango]

Gosh, so many of us with Addison's on here.

[CrunchyCarrot]

I found this article written by a Hungarian doctor, who suggests that coronavirus is dangerous for thyroid patients. The article is in Hungarian so here's a translation:

Coronavirus is also extremely dangerous for thyroid patients - What can be done according to a doctor?

Prof. Dr. Balázs Csaba 2020.04.11. Source: Buda Endocrine Centre

femina.hu/egeszseg/pajzsmirigy-mukodes-koronavirus/

Coronavirus is the most dangerous for the elderly and those with diseases - does the latter group include decreased thyroid function?

It is a common question among patients whether decreased thyroid function also means increased susceptibility to the COVID-19 virus.

With regard to the coronavirus epidemic, it is no coincidence that anyone who can should stay at home: anyone can catch the virus, but it is most dangerous for the elderly and sick people with weak immune systems, so they need to be extra careful to keep their distance.

Is the virus a threat to thyroid patients?

The short answer is yes, if the patient with hypothyroidism, has not been well treated.

Thyroid hormones, T4 and T3, are vital to the functioning of the immune system. Therefore, it is understood that the frequency and severity of infections were also significantly higher among patients with hypothyroidism. This is also supported by international observations and reports on viral infections.

Function can be restored with proper replacement

SA Sebastian and colleagues studied 159 patients with retroviral infections and found that the incidence of a subclinical hypothyroidism was high and influenced by each other. A low immune defense along with a higher TSH level. A large number of other observations are to be understood, so that in the absence of T4 and T3 hormones, the body's immunity can be significantly reduced.

Previous experimental data have shown that the function of cells at the forefront of defence, called polymorphonuclear granulocytes - PMN - is reduced in patients, but with adequate replacement, normal function has been restored.

The function of PMN cells was also measured based on their ability to emit light, and an increase in cell function was observed in the presence of the hormone T3. Subsequently, the function of immune cells, the so-called lymphocytes, which indicate the degree of cellular immunity, was also tested, and a clear increase in function could be detected.

What follows from this data?

Susceptibility to infection is significant in patients with impaired thyroid function. It is therefore important to ensure that those concerned do not stop the thyroxine supplementation they have started, and even to increase the daily dose slightly if necessary and to supplement it with vitamin D3, of which 3000-4000 IU per day is necessary for proper functioning.

[CatherineOfAragonsPomegranate]

Thanks for that @CrunchyCarrot. Very interesting!

@SirVixofVixHall utterly ridiculous you have never been sent to an endo. Mind you neither have I. Glad you have figured out what works for you now.