More Tumours on Thyroid

[Paulaw22]

No I'm not posting on the wrong site!

I have PA and had tumours so big on the left side of my thyroid that it was choking me, so they took the left side away. This left me with damage to the left side of my voice box, only one side works.

That was six years ago. Before that I had to have a full hysterectomy for what they said was endometriosis but when they did the operation they found a tumour which was going from my pelvic cavity into my bowel and causing bleeding.

Two years ago I was diagnosed with a tumour in my left kidney, hundreds of polyps in my stomach five of which were over 2.5cm again bleeding. Then when the kidney one was removed I got one in my leg and now I've got some in my remaining thyroid and the surface is said to have disease.

My question is that I've finally been given levothyroxin 25mg and initially my hair loss eased but now after six weeks it's falling out again!

The ENT cancer specialist has said that it's too dangerous to remove the piece of thyroid left until the tumours get too big or become malignant but they will keep an eye on them because these tumours can change if I get a certain type of virus or they get knocked, he has also said they they definitely think that my PA is to blame for the tumours.

It seems that every time something happens it always comes back to PA. I have fibro too, migraine which have caused auras on my brain and sight problems, I also have Ankylosing Spondylitis, asthma and had operations on my gall bladder.

Has anyone had similar issues?

[Gambit62 Administrator]

sorry to hear about the tumours and everything else.

I hope someone does respond who has been through similar problems, though I have to admit that the problems you have experienced aren't something that I have experienced.

Unfortunately being on B12 does seem to result in tumours growing larger than they otherwise might just because the B12 will promote reproduction of the abnormal cells as well as the normal cells ... and B12 deficiency is also linked to higher risks of cancer.

I presume you are being treated with shots for the PA - what regime are you on and how do you find it?

[Paulaw22 in reply to Gambit62]

I'm on shots every six to eights weeks from my GP. It seems to be a genetic thing I thought having the shots would prevent it happening but unfortunately it appears that anything that had started prior to my PA diagnosis and treatment will continue. The injections will purely prevent any further deterioration. My PA was very very bad my levels where very poor when I was diagnosed. My GP said I was lucky not to have multiple organ failure and I had a genetic PA. I don't have B12 deficiency I have full blown PA with very low intrinsic factor. I struggle to digest foods with high b12 content and High iron content I get vomiting ect. It just sits in my stomach and doesn't digest. Red meat is a big one for causing that also dark green vegetables.

[Gambit62 Administrator in reply to Paulaw22]

PA causes B12 deficiency and it is the symptoms of that deficiency that are the symptoms of PA.

Do you feel okay for the whole time between shots or do they help for a while and then it's just the long slog waiting for the nex injection?

[Paulaw22 in reply to Gambit62]

It's a long slog. I was having six week injections but I was under a consultant that works on research with the PA Society, Professor Pritchard, who said that I was having a reaction to the preservative in the Hydroxybalim I was being given and it was making my migraine worse. So with the help of my GP, we went back to 12 weeks and have gradually decreased the gap to eight weeks now without a reaction. I do tend to have a sensitivity to salt as my mouth blisters if I have salty foods, even garlic salt.

So I top up in between doses with my sublingual spray.

[Gambit62 Administrator in reply to Paulaw22]

sorry all sounds like a nightmare.

good to hear that you are managing to reduce the gap between injections

[Holnee]

Is it possible that the tumors are not related to your PA? There are genetic conditions that result in multiple tumors--the sites of those tumors depend on which gene is involved, but there are some that cause tumors predominantly in endocrine organs, which sounds similar to what you've described. It might be worth looking into from that point of view. It may affect how your doctors approach the treatment to your tumors, independent of the PA.

[wedgewood]

As you have PA , you will have low or no stomach acid (,professor of gastroenterology told me ) it's called Hypochlorhydria or Achlorhydria respectively ) As a result your stomach flora will be upset . It needs some help in the shape of probiotics . These can be as a supplement of yu can make your own sauerkraut with organic red or white cabbage (Google for recipes)Also acidic drinks are good - organic cider vinegar diluted , lime juice etc . There is no NHS treatment . If you struggle with foods with high B12 content e.g. Red meat, why don't you give them up? You are unable to digest them properly, and that will cause tummy problems . You could even go vegetarian without any harm , as you are getting your vital B12 in injections . You mention problems with dark green vegetables . Well I would be inclined to give them up too . If you're supplementing with folic acid you will get enough B9 .

I do wish you all the very best in your quest for better health .

[Paulaw22]

Thanks for the kind comments. Firstly, the tumours seem to be turning up anywhere and everywhere but they all seem to be at the entrance to major blood vessels now I come to think about it. The massive one in my thyroid had grown through the artery in my neck, the one in my kidney was at the top of the main artery to my kidney and the one in my pelvis was interrupting the blood supply to my ovaries. The one in my leg is just under my knee and causes issues with the veins again.

I have seen advice even on the Pernicious Aneamia web site where they were asking for people who get these tumours to contact them as they are doing studies on it. But I have been told by a few consultants that my having it so long can be a factor.

I have problems with acidic foods and even orange juice can cause my stomach to bleed. I seem to get a lot of bile because my bike duct was removed along with my gall bladder. I have to avoid fried foods, pineapple, oranges ect also alcohol especially wine is an issue. Cabbage gives me bad stomach cramps, always has. I also have an allergy to lime it affects my breathing. I'm very allergic likes of dust, animal fur, birds, petrol fumes, even coal fires!! I'm ridiculously fragile lol always have been. I was told in the past that because my mother carried me whilst undergoing treatment for TB. They told her to have a termination but she refused although she was stressed all through the pregnancy. It was the medication she was given very large doses of and even had half her lung removed before she found out she was pregnant! It was high doses of Streptomycin that she was given and told she would live only five years at the most. She lived for another 38 years !!