Covid 19 and Guidance for Hashimoto’s patients - Thyroid UK

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Covid 19 and Guidance for Hashimoto’s patients

HashiFedUp profile image
42 Replies

Hi all

Having not had a letter from the NHS re Hashimoto’s and risk with COVID-19, I decided to email my private Consultant.

His rely was that Hashimoto’s patients are immune compromised and so should self isolate for 12 weeks. I am also on one immune suppressant for joint pain so i will stop taking it to see if I can bare the pain.

Has anyone else guidance from the NHS or direct from their consultants?

Keep safe x

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42 Replies
Lora7again profile image
Lora7again

I don't have one and I am still having to go out to shop for myself and my Dad who has COPD. Some of us have no choice but to shop and take as many precautions as we can.

helvella profile image
helvellaAdministrator in reply toLora7again

An awful lot of Hashimoto's sufferers have never seen a consultant.

I am aware of some who were referred by their GPs but rejected by the consultant and left with just GP care.

Given the large number of Hashimoto's patients, the lack of guidance on the main statements isn't helpful. But the British Thyroid Foundation continues to say:

Are individuals with autoimmune thyroid disease at increased risk of COVID-19 infection?

COVID-19 is a new virus, so we have no information on how it affects individuals with thyroid disease. However, thyroid disease is not known to be associated with increased risk of viral infections in general, nor is there an association between thyroid disease and severity of the viral infection.

Many people are asking whether having an autoimmune thyroid disease means you are immunocompromised. We can confirm it does not. The part of the immune system that’s responsible for autoimmune thyroid conditions is separate to the immune system that’s responsible for fighting off viral infections, such as COVID-19. Patients who are classified as having a weakened immune system (immunocompromised) are typically those with conditions such as leukaemias, HIV and AIDS, or who are on medicines such as high-dose steroids, immunomodulatory drugs for rheumatoid arthritis or multiple sclerosis, cancer chemotherapy or following organ transplantation.

Does being on medication for my thyroid disorder suppress my immune system?

Neither levothyroxine, nor carbimazole nor propylthiouracil, are immunomodulatory therapies. i.e. they do not change nor weaken your immune system. However, some people with thyroid eye disease will be on high doses of steroid medication which can suppress the immune system (see next question below).

Full text available here - and was updated 25/03/2020:

btf-thyroid.org/news/thyroi...

So we have your expert saying one thing and the BTF saying another.

leaf1 profile image
leaf1 in reply tohelvella

The one thing we tend to have in common with aids and cancer sufferers is a low to below the scale for lymphocytes... mine increase with oral steroids which I some times have to use for my asthma, but unfortunately do not help with fighting off this bad voodoo virus .. meh

Marz profile image
Marz

Not a word - but then I wasn't expecting one ! From reading here it would seem Doctors have little understanding of auto-immunity so am guessing we are not considered at risk.

I suspect we need to take care along with everyone else ... I have Hashi's and Crohns and recently struggled with a coughing flu virus that others were able to shake off more easily.

Lora7again profile image
Lora7again in reply toMarz

I couldn't recover from a chest infection I had the beginning of January and I am wondering if I had it. Like you I could not shake it off and had a horrible cough and temperature. After 5 weeks of coughing and 2 lots of antibiotics I went to the GP who saw I was sweating and shaking and said she wanted to call an ambulance because she thought I was having another thyroid storm. Luckily I wasn't but I cannot understand why my son got over the same bug in a couple of weeks and it took me and my husband over 6 weeks to recover ... I now learn that coronavirus has been here since January so a lot of us could have contracted it without knowing.

Marz profile image
Marz in reply toLora7again

Taking anti-biotics causes viruses to mutate and therefore prolong any infection. Difficult to know which symptoms are the virus or a secondary infection. I prefer to err on the side of caution and avoid anti-b's wherever possible .

When your body is blasted with Streptomycin - Rifampacin - Izoniazid - and Solazapyrin for 16 months it takes a lifetime to recover. Spellings could be suspect as it was almost 50 years ago ...

Lora7again profile image
Lora7again in reply toMarz

I had to take antibiotics because my GP listened to my chest and told me it was infected. I rarely take them but I had to on this occasion because I had to call an ambulance because I could not breathe. My husband did not need them because his Doctor told him his chest was clear. His cough lasted longer than mine because he was given nothing. I recovered once I was given prednisolone for 5 days because my chest x-ray indicated inflammation. I do know about antibiotics having worked in a hospital pharmacy for many years.

in reply toMarz

TB meds destroy our bodies, keep safe x

MichelleHarris profile image
MichelleHarris in reply toLora7again

I have wondered if you actually had Corona as you were so poorly for so long. Pleased youre now recovered x

Lora7again profile image
Lora7again in reply toMichelleHarris

I know ... I have never had anything like it before and I have had a few flu bugs in the past which lasted a couple of weeks. I hope they bring out a test to see who has had the virus so I can find out. I honestly felt like I could not breathe and I had to sit up all night in bed because of this .... it was very scary.

MichelleHarris profile image
MichelleHarris in reply toLora7again

Hopefully the test will be rolled out soon x

BadHare profile image
BadHare in reply toMichelleHarris

My URT infections commonly lasted >4 months at a time, pre thyroid hormones boosting my basal temperature. Now they linger throughout winter but are extremely mild by comparison.

I think in general, we need to assess our hormone intake in relation to body temperature as our doctors won’t pay attention to something so simple.

HashiFedUp profile image
HashiFedUp in reply toMarz

Hi. If you have Crohn’s disease you should of received a letter from The NHS stating you are at risk and you should be self isolating. My friend has Crohn’s and she is in for the long haul because of it. Have you had your letter??

Marz profile image
Marz in reply toHashiFedUp

No !

Marz profile image
Marz in reply toHashiFedUp

The surgery have confirmed I do not have a code on my file to denote I am vulnerable.

I have always assumed as I am elderly with an underlying condition that I should be self isolating ... no problem.

HashiFedUp profile image
HashiFedUp in reply toMarz

If you have Crohn’s you should DEFINITELY have had a letter from the NHS and you are at risk and should be self isolating. Are you self isolating? : )

Marz profile image
Marz in reply toHashiFedUp

Of course ! As mentioned above ...

MichelleHarris profile image
MichelleHarris

Should we all contact our GP’s or Endo’s ??

I had yet another rash/virus in Feb despite all my vit D vit C and Zinc supplements x

Lora7again profile image
Lora7again in reply toMichelleHarris

Can you talk to them using facetime? A lot of surgeries are doing this now.

MichelleHarris profile image
MichelleHarris in reply toLora7again

Still not got all my blood results including Pitruitary tests, from 3 wks ago despite secretary writing to me aplogising for delay twice. I feel like emailing her again to say, just print them off, thats all I want, I rather trust interpretation of results on here! I still dont feel well. Medics dont care about that or that Ive been double sighted for a year. But I feel like a nuisance with all thats going on x

Lora7again profile image
Lora7again in reply toMichelleHarris

Could the secretary email them to you? I know a Doctor has to look at them first but you are entitled to see what they are.

MichelleHarris profile image
MichelleHarris in reply toLora7again

Yes thats what secretary has apologising for. She says Endo has seen them and she is on her own and hasnt had time to type up all the letters including mine 😞. I just wanted results x

Lora7again profile image
Lora7again in reply toMichelleHarris

It must be frustrating for you and I do not know why you have to wait for a letter when a email is quicker.

BadHare profile image
BadHare in reply toMichelleHarris

The endo secretary should be able to respond unless they’re seconded elsewhere. It’s not as though they frontline medics, though their health & family issues could cause absence. You can only try which is better than frustration!

My MRI (not a pituitary one) follow up has been delayed & may well be cancelled. The physio I saw was drinking diet coke so her immune system will be abysmal. 🤢

HashiFedUp profile image
HashiFedUp in reply toMichelleHarris

I would email your consultant as they have more in-depth knowledge x

Treepie profile image
Treepie

Had a text and a letter but probably because Type 2 diabetic and or because had chemo last year. No reason was given. I suspect they are going alphabetically by surgery re letters as mine begins with E and someone I know with MS and partner has COPD whose practice begins with K has heard nothing.

The following 2 quotes from the British Thyroid Federation:

"However, thyroid disease is not known to be associated with increased risk of viral infections in general, nor is there an association between thyroid disease and severity of the viral infection."

"However, it is possible that patients with ‘uncontrolled’ thyroid disease (these are people who have very recently started medication or who do not take their thyroid medication as prescribed) may be at higher risk of complications from any infection."

It is most notable that the BTF seems to be under the impression that all patients who take their medication (other than stated above) (this excludes of course liothyronine and NDT which are both blacklisted throughout the UK) will not be at higher risk.

BUT, there are 300,000 of us who remain PERMANENTLY ill whatever dosage we take of prescribed medication.

As the BTF work in harmony with the BTA and the BTA recommendation is to blacklist eg NDT (and probably T3 as well) and I know perfectly well that NDT is, and always will be the ONLY "drug" that will EVER make me well, I disbelieve EVERYTHING that either of these charities says.

MY recommendation therefore is to assume that everybody with unresolved thyroid issues and therefore a compromised immune system, should take the utmost care to avoid the slightest chance of catching this killer virus. It's too late to start taking care after you get it and discover, when it does cause more serious issues than expected, that what I believe is perfectly true is happening to you.

helvella profile image
helvellaAdministrator in reply to

I suggest you contact the BTF and forcefully make your points to them.

At least you will have documentary evidence that you tried to make them understand should it ever be useful.

Hillwoman profile image
Hillwoman in reply tohelvella

I made a forceful and quite detailed complaint about the recent BTF public statement, but via social media, since it was easier at the time. I think I'll take a screenshot, just in case!

flo-jo100 profile image
flo-jo100

My Endo said no additional risk for me and I have Hashimotos!

HashiFedUp profile image
HashiFedUp

It’s as clear as mud then. No chance for us thyroid patients. Normal service resumes! At least we’re used to it.

May I suggest that no one working at the BTF has ever had or know anyone with Hashimoto’s disease! I have never taken anything they’ve said with any validity anyway - don’t even bother going on their website!

Well I’m assuming I’m at an increased risk and we’re taking precautions like not going shopping. One dog walk a day early over the fields so complete social distancing.

Better to be safe than sorry. I don’t want to finding you the hard way that the BTF are wrong thanks 😊

Keep safe peeps x

jezebel69 profile image
jezebel69 in reply toHashiFedUp

Well I’m assuming the same. Viruses always hit me harder than my husband so why take chances? Too late if they change their stance on our vulnerability later

Marz profile image
Marz in reply tojezebel69

Hubby and I both have Hashimotos but a recent virus had me floored for weeks - hubby had the same bug but recovered after a week ! Perhaps it's testosterone that is the big protector !! 😷

RedApple profile image
RedAppleAdministrator in reply toMarz

Although I think they said CV is hitting men more than women.

Marz profile image
Marz in reply toRedApple

Probably they take prescribed meds more often than women - !!

jezebel69 profile image
jezebel69 in reply toMarz

Or how your Hashimotos is behaving at the time. You and hubby would ride that wave differently.

Marz profile image
Marz in reply tojezebel69

At 80 and 73 we rarely know what's what when it comes to symptoms 🥰🥰 I have Crohns which made me more vulnerable apparently ! ( England cricketer in S Africa - with Crohns - took longer to recover from a virus than the rest of the team on the recent tour ! - as commented on by S African Docs )

I

Algic profile image
Algic in reply toMarz

I have a friend with crohns and an additional bowel disease they got their letter before me. I've had pneumonia 5 times and have asthma as well as other conditions my letter and text arrived last tuesday.

Marz profile image
Marz in reply toAlgic

I have not received a letter - I have Crohns . I did receive a letter for a smear test as I was under 65. I am 73 ☆

HashiFedUp profile image
HashiFedUp in reply toMarz

if you have crohns you should definitely have had the nhs letter and you should be staying at home and not going out at all. And same for the household. Using shopping services from your local community.

Marz profile image
Marz in reply toHashiFedUp

Been doing all that for weeks - since 27th December actually ... Did you realise you told me this 18 days ago ? I replied too !

Lora7again profile image
Lora7again

I have had a horrible day standing in queues to get basic food. I took my blood pressure when I got back late this morning and it was sky high so I decided to go and lie down for a couple of hours because I was worried I might have another thyroid storm. These are grim times and I am trying to keep calm but it is very difficult.

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