Posted , 5 users are following.
My numbers are dropping rapidly but i hurt like buggery. Doc is looking at vitamin deficiency and booked me in to see a rheumatologist. I have no swelling but it is as if my ankles wont take my weight. I am about 145lb so although heavier than I like i wouldn't have thought it would be big enough to cause a problem. Can anyone help or shed light on my discomfort...
1 like, 10 replies
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eric89660 ellen12819
Posted
I’m now in the 50 to 80 range but my joint pains haven’t gone away completely. They are a bit better than they were but I still get outer thigh pain,as well as my ankles and lower legs. Congratulations on getting referred. They don’t seem to like to do that. Nice to see buggery used in that context again.
ellen12819 eric89660
Posted
Thanks Eric, a bit of blast & bugger comes in handy from time to time haaah! It was my G P who referred me, a bit of guilt for not finding it sooner i think. I am hoping it is just vitamin or mineral deficiency. .. we'll see.
lorraine73505 ellen12819
Posted
Hi Ellen
Have a go at Turmeric capsules (not sure if you are in UK but Holland and Barrett have them £15.99 for a bottle of 100 one-a-day capsules. You might also have pseudo gout in your smaller joints - this can be a side effect of our condition. Be careful if the GP gives you naproxen - I had a massive allergic reaction to this (sudden itchy, red blotchy all over for about half an hour - scary) - even though I can take Ibuprofen no problem..... so maybe try ibuprofen (anti inflammatory) and turmeric capsules to be on the safe side? Good luck! Lorraine
ellen12819 lorraine73505
Posted
GillianA ellen12819
Posted
Hi Ellen,
I can think of two possibilities that might be worth asking your doctor about?
First possibility: if you are really stiff in the morning and the stiffness takes way longer than a few minutes to wear off, ask about the possibility of inflammatory arthritis (e.g. rheumatoid arthritis.) As far as I know, having a genetic iron overload disorder doesn't increase your risk of inflammatory arthritis, but it doesn't decrease it either, so if what you have is behaving like an inflammatory arthritis, maybe it *is* an inflammatory arthritis.
Second possibility: one type of joint disorder that is more common with hemochromatosis is pseudogout (calcium pyrophosphate deposition disease) - it causes little bits of calcium to be deposited where they shouldn't be and you can actually see the calcium flecks in the tissue on X-rays. Some of the calcium crystals can end up inside the joint spaces and that can make for very sore joints. Having overactive parathyroid glands can also do this (hyperparathyroidism).
A third possibility that doesn't fit with "no swelling" but I'll mention it just in case: when one joint at a time becomes red and hot and swollen within less than a day, then gradually gets better over a week or so until it is right back to normal. The next flare up will probably be in a different joint altogether. This is called palindromic arthritis and as far as I know isn't any more or less likely if you have iron overload, but probably is a clue to having some sort of underlying inflammatory arthritis. (My rheumatologist said that one third of the time it turns into rheumatoid arthritis, one third of the time it turns into lupus, and one third of the time it just stays as palindromic arthritis. In my case, thanks to multiple patient postings on the internet, I discovered that eating gluten may be a factor in palindromic arthritis and RA and lupus. This turned out to be true for me, because once I cut gluten completely out of my diet - no more joint flares.)
I hope some of this is helpful . . . .
ellen12819 GillianA
Posted
Thank you Gillian,
The more i learn the better position i'll be in. I take PPi's and They have been tested for chillating iron. It was found that they take the vitamins and minerals along with the iron. So I hope lack or a deficiency could cause joint pain.
miller.jones ellen12819
Posted
This is standard it's to do with bone marrow production.
They do not tell people the full story but having blood removed the body reacts, due to the high volume over short periods when we are under treatment the body reacts very aggressively (this is why donating blood has such strict time rules)
It's worth making sure you are getting enough Vitamin D and Calcium as well
ellen12819 miller.jones
Posted
This makes sense to me and I hope it is a reaction to all the venesections , I look forward to getting the results . I am now officially 50! Ferritin, so maintainance here I come... hopefully pain free.
miller.jones ellen12819
Posted
When numbers drop rapid if you are near the maintenance target you will experience more pain compared to someone who has very high numbers.
You may ask what difference this makes well they work by 5% rule so if you think of 5% from 1000 compared to 100 that is a big difference also the body tries to fight back when you start running low so it's more aggressive. (this is why so many people see big drops at the beginning and it slows down towards the end)
this is why some people feel a lot worse when they have reduced there numbers so you may still experience some pain hopefully after awhile it will balance out for you (each person is different)
Horrible thing to pass on really which is why i opted out to having children
ellen12819 miller.jones
Posted
By the time they found my HH my three children had long legs and some had children of their own... hindsight is a great thing if you have it 😯 tThanks fo your reply it makes good straight forward sense. In the last two days I have been told ... my thyroid has slowed significantly, my lungs show Chronic Pulminary disease and I need vit D. Oh and I now have an appointment with rhumatolagist. And I thought the venusections were the biggest hurdle cest la vie. But on a lighter note ... I as iron woman could be a superhero! And I am here to tell the tale.