I tested positive for anti gastric par cell a couple of months back. I was told that I have Pernicious anemia but I also read that that can mean autoimmune thyroiditis.......I’m confused. My thyroid antibodies are very high at 216. The range here is max 0.06, my eosinophils are too high, cholesterol too high. I was told by an endocrinologist recently that I was on my way to Hashimotos but because my TSH was “within range” she couldn’t prescribe for the moment. I don’t know anymore. I just feel worse and worse by the day
Thanks 🙏
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Emmafrank41
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Can you add your most recent Thyroid and vitamin test results and ranges
Are you now getting B12 injections. How low was B12 result?
Have you had vitamin D, folate and ferritin tested?
If not ask GP to test these
Presumably it was high TPO antibodies ?
If antibodies are high this is Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease).
Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels
Low vitamin levels affect Thyroid hormone working
Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten. Dairy is second most common.
According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps, sometimes significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)
Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies
Ideally ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first
Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse
Do you mean Anti-gastric parietal cell antibodies? I believe they can be found in people with Hashi's, yes. But that doesn't mean that you don't have Pernicious Anemia. A lot of people have both.
Did you have Intrinsic Factor Antibodies tested as well?
With regards to your raised TPO Ab - you are not 'on your way to' Hashimoto's. You have Hashimoto's.
Can't remember, have you had an Ultrasound scan of your Thyroid yet?
Edit:
ps
Emma I've just looked back to your last post of 25 days ago. We covered all this then. I can't understand why you're still with that private Endocrinologist. My advice remains the same as it was then - to make a complaint and seek a refund.
Are you under NHS Gastroenterologist and Endocrinologist yet? What does your heart Specialist think of all this?
Did you get anywhere with the helpline I gave you in Ireland?
They didn’t test for intrinsic factor antibodies at all mary. It’s been one difficult journey, a nightmare to be honest. I know how severe vertigo. I rang the heart foundation and they said it’s not their area at all. My GP isn’t listening. Nobody is listening and I was told I’d get nothing from another endo. That they won’t prescribe because the tsh is within range. I’m suffering so much and they want to in a way put it down to anxiety. My whole body shakes now most of the time. I don’t know anymore. It’s a disgrace, the whole thing. They are sending me to gastro. That will be private because the public waiting list is two years, even though I have fecal incontinence.
I’m no longer w that endo. She was 200e and I stood my ground but got nowhere
You need Colorectal Specialist referal for the incontinence.
Also Continence Advisor / Nurse - most accept self referals. Contact the Bladder & Bowel helpline.
Why is it 2yrs waiting list for the Gastroenterologist?
Can't the Consultant treating you for the Lymes or your Heart Consultant refer you on to Endocrinologist and Gastroenterologist?
Why is your Cholesterol high now? Has it gone up since 2 months ago when if was 5.4 ?
What is the recovery period for Lymes? Or is it the chronic condition you have.
I don't have any experience or knowledge of Lymes so can't really comment.
Did you get copies of your medical records?
ps
About the helpline - what isn't their area ? Wasn't it the two urine tests results I suggested that you put a post on British Heart Foundation forum about or call heart helpline about?
Nobody is taking me seriously at all. The public waiting list is a year and a half but private will b a couple of weeks hopefully. I’m going round in circles. I’ll get on to the cardiologist. He’s a decent guy but the problem is the endo that I saw is from the same hospital and he probably won’t go against her. The cholesterol is still the same. As for Lyme, I was diagnosed by a bio magnetic therapist but unfortunately my blood here in Ireland came back negative so I was told I have to send it to Germany which costs a lot.
I just have the bloods that were done a few months ago.
I don't think 5.4 Cholesterol is anything to be too concerned about. It used to be within range - till they changed the range! You could always try eating porridge or adding fine oat bran to foods to bring your Cholesterol down a bit.
If the Cardiologist is decent - have you asked him specifically about those two abnormal results?
Also - could you ask him about referals to Gastroenterologist and possibly Haematology?
Did you apply for copies of ALL your medical records yet - from NHS hospitals and the Private consultant. ? You can now legally obtain all of these at no cost. They HAVE to give you copies free of charge (since 25 May 2018).
About the Lymes - thought you'd had a NHS diagnosis from a Consultant or GP?
Once you have all your records you can look back and see if any previous tfts (Thyroid Function Tests ) showed a HIGH or high-in-range TSH or LOW or low-in-range T4 etc. Highlight every abnormal result and asterisk every low or high in range result. (Keep with you to show all doctors). Keep your written list of symptoms with you to show also & say as little as possible.
When you've had a break from this and caught up on some rest, go back to a GP and take someone with you. You can ask for a second opinion - so find out what other Endocrinologists there are around before going back to GP.
Did you ask for the Ultrasound scan of your Thyroid?
Make sure any future blood tests are taken early morning & fasting - don't mention that - just say you can only make early morning so could you wait for a first appointment slot. If they say they can fit you in now, say you have to go.
You were diagnosed with Pernicious Anemia - so how is the treatment going for that?
What about Vitamin D?
You have a lot of medical conditions, the way of the NHS is very slow with one.Take a rest from fighting if you need to but don't give up. Don't let previous bad experience with doctors put you off. Don't let them intimidate you. xx
ps
I've just re-read your post - the Endocrinologist said she " couldn't presrcibe for the moment ". So when is your next Endocrinologist appointment?
Maybe starting Levothyroxine is closer than you think?
Could she have said 'you are on your way to Hashimoto's Hypothyroidism' or was is just " Hashimoto's' that she said?
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