My daughter who is 27 has been very ill for a year. After being passed from NHS pillar to post and sent away with nothing, I paid for her to go to a private nephrologist, because I thought she had kidney problems. He gave her a CT scan and noticed she had an irregularity in the womb and recommended a gynae follow-up, which she had, but nothing was said. No kidney problems were identified. Following awful hypothermia and temperature problems, I then sent her to Dr Peatfield and she has been taking Adrenavive II and Metavive I for the last 7 months. Her GP also sent her to a London Hospital Endocrinology Dept. A couple of months ago she ended up in A&E with all her glands in her body up, particularly in lower abdomen, vomiting and very ill. It was discovered she had very low Vitamin D levels, low iron and a poor Ferritin transference rate. They prescribed a month of high dose Vitamin D. She didn't seem to be absorbing this through her gut so I recently changed her to a mouth spray Vitamin D & K and have given her iron supplement and magnesium. Because her glands were up in her lower abdomen, her GP sent her for a scan. They noticed her endometrium was very thick for mid-cycle. They wanted it repeated mid-cycle this month. She's had it today and the Dr doing it expressed shock that she was only 10 days into her cycle, but refused to tell her what he had seen or why he expressed such shock. She can't get an appointment with her GP until June and is worried.
Has anyone had anything similar, or perhaps has some sort of insight about this?
Thanks for reading all this, and helping if you can.
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I think the doctor should not have made comments without following them up and I'm sorry but I have no knowledge to comment on that other than to say try not to worry-it might well be something different but it might be something not that unusual but his first experience.
What I really wanted to comment on was the Vitamin D. Usually if we need to supplement then it's often for life though once optimal we can may be find a maintenance dose and I know if you stop Vit D then levels can drop like a stone! So best to keep it going for the moment.
Yes, she's had two scans a month apart and both doctors have repeatedly asked her if she has children, even to the point where one said "Not even one?" That's really frightening for a young girl - she hasn't even got a boyfriend, so it's not like she could get a move on with that. Two scans, and no real answers other than 'womb lining thicker than it should be'. She now has to wait until June to see her own GP to try and find out what's going on, so I just thought I'd try and see if anyone else has had this. Thanks for your kind words.
Sorry you are so worried. Dr P is very good perhaps you should see him again in light of all your information now.
I had very heavy periods which were a nightmare to contain and i have Hypothyroidism which I read is one of the many symptoms. I presume I may of had a thicker womb, it's possible. I had an operation to scrape off the lining which worked, Endometrial Ablation....
Sorry I can't help but I'm sure good advice will follow later.
Thanks Marymary7. Dr P is very good, but I think he's ill at the moment. She will try and contact him again, but she hasn't really got much information to tell him until she gets some sort of result of these scans from her GP in June (no appointment available before then). Thanks for the info about endometrial ablation - it's a ray of hope.
Can you get into your medical records and see them on line? The letter to the GP will be there in a few days.
We can do this at our surgery but as they have been known to lose the letter I always ask for a copy to come to me as well. It helps to know what follow ups they have ignored and when you need a blood test too.
Ask to check for Mast Cell Disease... mast cells are implicated in Endometriosis (and Hashi's). Her overactive immune response is a clue to a mast cell issue (histamine related). Endometriosis is supposed to be 'Estrogen dependent' so it would be worth looking into all hormone imbalances and certainly trying to get optimal thyroid treatment. ( Checking antibody levels will be useful.)
Thank you! I'd not heard of Mast cells, and that's a really useful piece of information. She also suffers really badly with psoriasis which is an auto immune disease, so that might well be another connection. I have already told her to write her GP a letter and ask for a full hormone assessment, so that when she sees him in June, he has all the information at hand, and I'll add Mast Cell disease to this as well. Thanks for taking the time to reply.
Hi you say your daughter isn’t absorbing medication... has she been tested for Ceoliac?. I am hypothyroid and have Sjögren’s and Ceoliac. When I was first diagnosed with hypothyroidism I didn’t improve on medication until after an endoscopy and biopsies revealed I was Ceoliac.. a gluten free diet has helped and I’m much better than I was 2 years ago... have to watch cross contamination though as getting glutened makes me ill and malabsorption affects my Thyroid
Thank you for your reply. She has been tested, and it came back negative, but has recently started a gluten-free diet anyway, as I've read this is the way to go. She's already feeling better on it, so I think she'll stick with it.
I do feel very sorry for your daughter. I had a miserable existence with bleeding until early menopause . My xproblems started in the early 1960s. No scans, interventions of any sort because it was ‘normal’ with hypothyroidism. Of course given the times I was also assured it would be fine after giving birth. It wasn’t. I never met anyone with my problems. My husband who had three sisters was amazed at how bad it was. Thank goodness for more enlightened times. That offers no relief to your daughter. I sincerely hope she gets the help and explanations she deserves soon. x
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