I’m new here, has anyone heard of a link of hypothyroid with Bullous Pemphigoid

[DottyOtty]

I’ve been taking 50mcg Levo since February and have been fine, have just been diagnosed with Bullous Pemphigoid, an auto-immune disease affecting the skin. High dose steroids plus other medicines. Looking at the British Association of Dermatology website on variations of Pemphogoid, there is a slight suggestion that it could be linked to thyroid diseases. Just wondered if anyone else has suffered with this?

[Marz]

Never heard of it - so good for you to be on the case with a thyroid connection.

Do you have Hashimotos ? - auto-immune thyroiditis ? Possibly that is where the connection is - auto-immune issues like to hunt in packs ! How is your gut health ?

Do you have any Thyroid results you could share with us - ranges too ....

I have Hashimotos and was diagnosed with Crohns at 27 - some 45 years ago !

[DottyOtty in reply to Marz]

Hypothyroidism runs in the family (my mother and younger sister). I must admit that due to other pressures (executor for my late aunt’s estate), I have just been relieved that my thyroid symptoms settled well on 50 mcg and was going to look into why once I’d finished my executor duties. Now this has cropped up, I will make it a priority. I’ll ask for my blood test results when I go to the GP on Thursday and post them. My gut is fine and I have been very careful how and when I take my medication (retired pharmacy technician!)

[Marz in reply to DottyOtty]

So OK as a Pharmacy Technician you must surely know whether or not you have Hashimotos ?? When you have your results do start a new post so more people can see them.

Were you re-tested 6 weeks after starting 50mcg Levo/T4 ? - perhaps you need an increase.

Always ask for all test results with ranges - so you can monitor your health and progress and post with more information ... the results are legally yours !

I suffered with vitiligo prior to being diagnosed with Hashimotos at 59 back in 2005. No longer visible. The skin is our biggest organ and is often a reflection of our gut health - even if we do not have symptoms.

So how do you take your medication ?

Could it be you have the skin disorder linked to Coeliac Disease ? Sorry have forgotten the name for the moment !!

Dermatitis Herpetaformis - or words to that effect !

[DottyOtty in reply to Marz]

I take my levothyroxine tablet with a full glass of water (250ml) one hour before breakfast which is either a boiled egg or a juice made from 50% greens, avocado, banana, mixed berries and coconut water. Black coffee (real not instant) half a hour or so later. No diary, etc until lunchtime. I’ll do some more research and post when I have found out more. Thank you for replying.

[Marz in reply to DottyOtty]

As you started on 50 mcg T4 in February you are well overdue a new test and a dose increase 😊

50mcg is a starter dose !

[diogenes Remembering]

If you have one autoimmune problem like autoimmune thyroiditis, then you have an increased likelihood of getting another. They are not linked except insofar as your immune system is generally affected and may give problems in different ways (lupus, diabetes etc). This disease usually resolves within 1-5 years so it could be a wait for resolution.

[DottyOtty in reply to diogenes]

Yes, it’s going to take a while but I seem to be responding well so far to the medication. Prednisone dose will slowly be reduced once blisters have healed. Rubbish disease though!

[shaws Administrator in reply to DottyOtty]

After reading another post in which doses of Vitamin C solved some serious problems this is another link which might be helpful. It might be worth considering. I cannot find the post at the moment.

healthline.com/nutrition/si...

[shaws Administrator]

This is a separate link:-

lpi.oregonstate.edu/mic/hea...

[SlowDragon Administrator]

Blood should be retested after 6-8 weeks and dose increased in 25mcg steps until TSH is around one and FT4 towards top of range and FT3 at least half way in range

Most patients need somewhere between 100mcg and 200mcg Levothyroxine

If you have been on only 50mcg since February then likely vitamin levels are low too

Very important to test vitamin D, folate, ferritin and B12

Extremely common for some or all of these to be too low, especially if under medicated. Many of us need to supplement to improve

Essential to test both TPO and TG thyroid antibodies. If either is high this is Hashimoto's also called autoimmune thyroid disease

NHS guidelines saying standard starter dose is 50mcgs

beta.nhs.uk/medicines/levot...

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).

About 90% of all hypothyroidism in Uk is due to Hashimoto's. Low vitamins are especially common with Hashimoto's. Food intolerances too, especially gluten. So it's important to get antibodies tested.

[DottyOtty]

Sorry, I misled you on the blood tests. The first one I had was TSH 5.2, GP said I was borderline hypo, but put me on 25mcg Levo (BNF starting dose for over age 50). Has another blood test (first thing, empty stomach, 24 hours after last dose), TSH was 5.4, so Levo dose increased to 50 mcg. Had bloods taken on Monday as part of the investigation into current problems which included thyroid and unfortunately was taken middle of the day, after medication,etc. I had booked one for later in the week first thing in the morning, etc, but this was cancelled due to test this week. This week my TSH was 2.6. I asked the GP what the T3 & T4 levels were and he said they hadn’t been tested. I shall request copies of the three blood tests this week when I have my stitches removed. I am back to see the Consultant Dermatologist soon for the results of two skin biopsies with reference to the diagnosis of Bullous Pemphigoid, so will pursue it further. Happy to pay for a comprehensive blood test beforehand to take along. Thank you for your replies.

[hooper]

I have just been diagnosed with Bullous Pemphigoid and have been hypothyroid for 12 years. GP didn't say anything about a connection. Can you tell me what you know and how you are now. I note you posted 10months ago.

[DottyOtty in reply to hooper]

Happy to have a chat to you privately if you like. I’m sorry that you have BP, what medication are you taking for it?

[hooper in reply to DottyOtty]

I've been given steroid cream. Not happy about that!

[DottyOtty in reply to hooper]

Have you seen a Consultant Dermatologist or had a biopsy to confirm the disease? There is a really useful patient information sheet on the UK Dermatologist website. As it is an autoimmune disease it could be linked to thyroid problems. You’re lucky if you only have steroid cream; I had a cocktail of drugs including high dose steroids to take. I’m in remission now but still on twice daily antibiotics.

[hooper in reply to DottyOtty]

I don't even know if my GP knows for certain it's Bullous Pemphigoid.

She gave me the cream and seemed to think it might do something. If it doesn't (and what she really means by that I don't know) she will send me to a dermatologist. You sound well looked after. I don't understand much about this disorder. I'll take a look at the UK Dermatologist website. Thank you that link. Do you live in the UK?

[hooper in reply to DottyOtty]

Would love to have a private chat.