undiagnosed, unwell and with other autoimmune conditions .

[Stills]

hello, new here but user of HU due to other diagnosed AI condition in rheumatology field.

Tests just starting to eliminate conditions, gastroscopy found nothing, abdominal scan pending, omeprazole prescribed.

Existing condition Adult onset Stills Disease (1979) med free except pain relief, constant symptoms joint pain, sore throat, skin growths, dry eyes, itchy skin, tendinitis, fatigue and brain fog, possible organ involvement as chronic.

Now 61 using Everol conti HRT for several years. February this year sudden weight loss, malaise, extreme fatigue , change in bowel habits, shedding hair, dreadful indigestion, nausea, vaginal spotting, dizziness , increased joint pain, rib/flank/ back pain, abdominal stabs , tingling arms, heartburn, bloating and gaseous with constant headaches, sore eyes, doom and anxiety level up with nightmares and disturbed sleep (and flare of usual Stills symptoms.)

Blood tests caused LOCUM GP ON PHONE to say liver or ovarian cancer. Repeat tests showed different result next test result due….. common factor high cholesterol, I’m 5’1” weighing under 9 stone with a healthy diet don’t smoke and exercise when able.

Surgery does nothing online, does not offer access to anything and only offers telephone appointments unless coerced by 111 calls.

That’s all I can tell you for now but reading the posts about the difficulty getting treated once diagnosed fills me with dread.

Thank you for reading.

[TiggerMe Ambassador]

Have you ever seen any of your thyroid results? You need to ask the receptionist for a copy of historic ones.... ideally now you need to get a full thyroid panel done privately to see where your fT3/4 are, Medichecks have a discount on at the moment

[Stills in reply to TiggerMe]

Never been tested for thyroid things, undiagnosed but ill with symptoms, I’m concerned about all the posts about getting tested and treated surely this should be matter of course for an illness. It appears from what I’ve read here that Drs don’t want to test or treat thyroid issues, I don’t understand this, do diabetics get spurned like this? I can’t ask receptionist as all calls go to message and never callback snd no f2f appointments given plus not allowed to visit surgery without an appointment catch 22. I assume this is why all the posts relate to getting tested privately and fighting for a script that suits, I think I’ll just stay ill, i haven’t got the fight in me for this when I already have a chronic AI condition, thanks for your reply and I wish you good days

[TiggerMe Ambassador in reply to Stills]

Best to grab yourself a private test and then present them with results which will force them to re-test if your levels show as being out.

You certainly have to be a bit proactive to get decent treatment for your thyroid... if you follow the advice on here there is generally a way to get what you need... one way or another!

Are you signed up to the NHS app which gives you access to your records?

[Stills in reply to TiggerMe]

Not signed up to NHS thing, tbh I’m overwhelmed by this, at least with Stills Disease although rare , steroids and pain relief kept it at bay back in my teens. Thanks for your advice, so just pay for test then send to GP and get script. The GP is a locum so no continuity and each new one criticises the last one, I will wait until the abdominal scan in case they find something else first.

[TiggerMe Ambassador in reply to Stills]

Get the results and post them up here for advice on the next step 🤗

[Stills in reply to TiggerMe]

Thank you , I will try

[SlowDragon Administrator]

Welcome to the forum

Ideally you need testing via GP ….in practice many thousands of U.K. patients forced to test privately

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

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

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Come back once you get results

[Stills in reply to SlowDragon]

Thank you, will do IF I ever get tested. Why is it hard to get tested, prescribed properly and treated thereafter for thyroid conditions ? Do Diabetics or MS sufferers for example get treated this way? Is a thyroid condition not something GPs deal with?

[SlowDragon Administrator in reply to Stills]

Current understanding, diagnosis and treatment of thyroid is extremely poor

Many medics still think unless TSH is over 10 treatment not necessary

But many people have symptoms and benefit from treatment when is TSH over 5

Starting levothyroxine - flow chart

gps.northcentrallondonccg.n...

And just testing TSH will not uncover central hypothyroidism

Testing thyroid antibodies and vitamins essential too

Is a thyroid condition not something GPs deal with?

often not dealt with very well

There’s almost 2 million people in U.K. on levothyroxine, 90% are female

[Stills in reply to SlowDragon]

I see…. Thanks for all the info, I’m appalled and shocked that the best chance of quality treatment and care is left to patients and can’t decide whether to give up now and tolerate symptoms or get my hypo(er)thetical boxing gloves out

[SlowDragon Administrator in reply to Stills]

Always worth getting FULL thyroid and vitamin testing done

Medichecks currently has 20% off

Come back with new post once you get results, members can advise on next steps

[Stills in reply to SlowDragon]

If I can get tested and results I will. Thank you

[SlowDragon Administrator in reply to Stills]

Do test early Monday or Tuesday mornings (not a Bank holiday) and not if weather very hot

Test early morning, ideally between 8-9am, only drinking water between waking and test

stop any supplements that contain biotin 5-7 days before test as biotin can falsely affect test results

What vitamin supplements are you taking

[Stills in reply to SlowDragon]

No supplements. Mainly veggie diet with 20x mgms omeprazole taken upon waking.

[SlowDragon Administrator in reply to Stills]

Ouch

So highly likely very low B12, iron/ferritin

Why are you taking PPI and how long been on it

it’s only meant for short term use

LOW stomach acid can be a common hypothyroid issue

Thousands of posts on here about low stomach acid

healthunlocked.com/search/p...

But never assume you have low stomach acid

healthygut.com/4-common-bet...

Web links re low stomach acid and reflux and hypothyroidism

nutritionjersey.com/high-or...

stopthethyroidmadness.com/s...

thyroidpharmacist.com/artic...

How to test your stomach acid levels

healthygut.com/articles/3-t...

meraki-nutrition.co.uk/indi...

huffingtonpost.co.uk/laura-...

lispine.com/blog/10-telling...

Useful post and recipe book

healthunlocked.com/thyroidu...

Ppi like Omeprazole will lower vitamin levels even further

gov.uk/drug-safety-update/p...

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

Iron Deficiency and PPI

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

onlinelibrary.wiley.com/doi...

vegetarians frequently have terrible vitamin levels

academic.oup.com/nutritionr...

The present review of the literature regarding B12 status among vegetarians shows that the rates of B12 depletion and deficiency are high. It is, therefore, recommended that health professionals alert vegetarians about the risk of developing subnormal B12 status. Vegetarians should also take preventive measures to ensure adequate intake of this vitamin, including the regular intake of B12 supplements to prevent deficiency. Considering the low absorption rate of B12 from supplements, a dose of at least 250 μg should be ingested for the best results.3

Vegetarian diet and low ferritin

pubmed.ncbi.nlm.nih.gov/278...

[Stills in reply to SlowDragon]

Thanks again for such great information.

PPI was prescribed early Feb when symptoms started and blood showed high GGT (cancer flag GP said). 40mgs, I weaned off by mid June and symptoms slowly returned. Two weeks ago I had an episode of shaky dizziness nausea unable to stand type of thing so saw nurse who ordered abdomen scan, bloods ( no results yet) and back on omeprazole. When I was diagnosed with Adult onset Stills disease aged 17 in 1979 I took steroids for about 5 years without no stomach protection or calcium supplements prescribed, I guess they didn’t know about osteoporosis back then. My known condition is auto inflammatory so my odds are on Graves, I have other AI conditions, Lichen Sclerosis, Interstitial Cystitis and Dupuytrens Contracture but this is all new to me and reading about the side effects of the medication is daunting .

[SlowDragon Administrator in reply to Stills]

have other AI conditions, Lichen Sclerosis, Interstitial Cystitis and Dupuytrens Contracture

All these are more common/likely with autoimmune thyroid disease

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

[Stills in reply to SlowDragon]

Interesting and good to know thank you. My Dad died recently, he was 86 and had non Hodgkinsons Lymphoma which I believe I’m at risk of due to Stills, our immune systems are far more important than I ever knew.

[SlowDragon Administrator in reply to Stills]

Stress and grief can affect adrenal and cortisol levels and this in turn affects thyroid

Get full testing and come back with new post once you get results

[Stills in reply to SlowDragon]

Final question then for now, should I discontinue using HRT Everol conti twice weekly patches?

[SlowDragon Administrator in reply to Stills]

Sorry no idea

Never used any HRT

[Wetsuiter]

I don't like the sound of your GP surgery. is there another that you could move to?

[Stills in reply to Wetsuiter]

Thanks for your response, it’s a big grim on health care here, I’ve spoken to people attending other surgeries and it’s a similar story locally . It sounds from the general feeling on HU that a private test and endocrinologist is the way forward with the hope of continued sympathetic prescribing from GP. I don’t understand though why there is resistance to NHS treatment, would they send me home without a leg cast if i broke my leg…. Am I about to become even more dissatisfied NHS, I will ask for refund of 40 years national insurance payments! I guess everyone here started off like this.

[TiggerMe Ambassador in reply to Stills]

If you respond well to Levothyroxine then it isn't so bad, remember most of the people here tend to not get along with Levo or need Liothyronine combination or on it's own which is a little trickier to get.... don't be disheartened make the first step we are all right behind you 🤗

[Stills in reply to TiggerMe]

No meds no tests no diagnosis so far just symptoms of hyperactivity

[TiggerMe Ambassador in reply to Stills]

Ah, I think they are much quicker to treat hyper

[Stills in reply to TiggerMe]

That’s good to know

[Stills in reply to Wetsuiter]

I’m within reach of good hospital though including Addenbrookes

[stiff19]

so sorry stills , I too would get medichecks thyroid test, doc told me to take folic acid I did private test tsh t3 and t4 and their doc advised I speak to doc as tsh high yet doc told me all good.Mind you he also tells me ive got too many problems and he wouldn't know who to send me too and has done nothing for me. i know how you feel with the giving up and frustrations my journey is 5 years long and some of my story would make your eyes water, I lose the will to fight regularly and there has been no other word but neglect when ive been very ill and no help. you're a tough cookie and don't give up on you, we shouldn't have to fight for help when our health is bad and you have a chronic illness which makes it harder still but I gave up and I shouldn't have given up on me, I feel your anger I feel it too , and still do,and it is all what you say it is, I cant afford to keep doing tests privately and need another, its a crap situation but somehow we've got to keep at it.get your boxing gloves out when you can , thinking of you 🙏

[Stills in reply to stiff19]

Thanks Stiff19, really good to hear from you. I agree about GPs being flummoxed by our conditions but what I’ve read here about thyroid tests and medicine is daunting, looks like we’re left to sort it out and find it ourselves. HU and all the contributors are a lifeline.

[stiff19]

Totally I as you , I cannot get my head around the thyroid tests and medicine, and oh yes I owe much to hu and all contributors .best wishes 🤞