Cramp & throbbing teeth
Posted , 4 users are following.
My levels are coming down following section since early March - They are now down to 350 after being 1000 on being diagnosed - Last couple nights I've had serious cramp in early hours morn in the back of my calf of my right leg - everybody gets occasional cramp but this was super cramp 
I mean I litrally couldn't move with it and had to ease my leg out of bed on to a chair to be able to stand up - its still aches bit now although is slowly going. Just wondered if anyone else had encountered this ? Also back begining Jan I had throbbing in my back teeth from two metal fillings I immediately thought toothache and went to the dentist only to be told there was nothing a miss - Not satisfied I went to another dentist and he also agreed there was nothing a miss - I was taking pain killers as this was again in the early hours of the morn - like drawing throbbing pain. I've noticed last couple nights I'm getting it again - Any one else encountered this ?
Paul
1 like, 12 replies
sheryl37154 PaulRL70
Posted
I also get aching teeth with no signs of problems - don't know if they are teeth with fillings. As my doc took 9 years to diagnose me, I ended up with a myriad of problems. One was that my once beautiful white teeth went grey overnight. People commented on it. Now that I know I had HH, and in discussion with a specialist dentist, he agrees that iron had got trapped in the pulp of my teeth making them look dark grey (some people called them black!). I ended up having a white coating put over them.
The aching could be caused by the draining of iron from the pulp of your teeth. I have never found any research or reference to HH affecting teeth.
PaulRL70 sheryl37154
Posted
Identical probs with cramps! Glad I'm not on my own
Must be something to do with the circulation once they start to section you 
Teeth weird prob - Like throbbing pain I get and yes its coming via the pulp of the teeth - thats spot on!
Paul
marie86421 PaulRL70
Posted
I know exactly what you are talking about. I get the same calf cramp and boy oh boy is it painful. It is usually in the early hours of the morning and sometimes I only have to stretch my legs and that sets it off. I feel like my foot is being drawn backwards and I have to get out of bed fast to manipulate my calf so that it eases. It is tender afterwards for a while. Whilst the muscle is in cramp it is incredibly hard to the touch and it is a battle to get it to free up.
Funny you should mention about your teeth. I am currently having lots of problems with my teeth. My pain is not throbbing but a dull ache that gets worse and worse as hot and cold fluids and foods hit the tooth. My tooth problem started a year a go. I had a deep filling which then led to a root canal treatment. The tooth has never felt right since but I have not done anything about until now when I have the pain again. I asked for the tooth to be extracted but the dentist told me that the tooth looked OK but I needed a filling in the one next to it. Had that done but still had the problem. After a bit of poking about and an xray, it was decided that it was the tooth the other side of the root canal filled one was given another filling. Well, my pain has gone through the roof and I am now booked in to have the tooth out tomorrow. This will be the tooth next to the root canal treated one and not the one that I think is the problem. I will be interested to see if my pain goes away after the extraction. I certainly hope so. I am taking Paramol at the moment which is very good at giving pain relief but the packet says to take it for three days only as it has codine in it and apparantly it is addictive.
I am interested to see that Sheryl has the same problems. Perhaps there is a connection with the iron overload. The fact that Sheryl's teeth went grey overnight reminds me of my mother's teeth. Her teeth were grey and she had them capped. This could be another clue as to which parent I have inherited the gene from. From what I am reading on this forum it could well have been my from my mother. My teeth though, are not grey and I am older than my mother was when her teeth went grey.
I hope you manage to get your teeth problem sorted out. Usually with a throbbing pain it indicates an infection. Did the dentist take an xray to see what is going on?
Marie
PaulRL70 marie86421
Posted
Identical probs with the cramp! I thought getting rid of all this toxic iron out of the body was suppose to be the right thing to do
Since started section had one prob after another 
I would be incred careful with your teeth had two dentists do panaramic x-ray and nothing - I like you was going down the root treatment thinking something was a miss - but then sort second opinon and the dentist said leave it - putting self through needless pain when its a underlining condition thats causing it - i:e Iron overload
marie86421 PaulRL70
Posted
Like you I thought getting rid of all this iron I would begin to feel good. I have to say that I don't feel good and would go as far to say that I feel worse. When I was at my highest ferritin reading I had lots of niggly things going on but not the aching joints and pain in the muscles.
I posted on this forum last year with painful hands. My doctor told me that it was probably the haemochromatosis and I was surprised at this because I thought that I would have felt this pain when my ferritin was high. Not necessarily was the answer. Anyway, I was referred to a rheumatologist, blood tests were taken and an x-ray (apparantly if the pain is due to haemochromatosis they can see this on the x-ray) but nothing showed up. The only thing that was slightly abnormal was my ANA blood test. Further blood tests were done as a result of this reading but it was all normal. Looking back at all my notes, my ANA blood test reading has always been slightly positive. Has anyone else had this?
With my hands I was referred to occupational therapy which didn't work and then sent for ultrasound on them. The physiotherapist got hold of my hands and manipulated them so aggressively that I thought my hands were going to break. After that initial treatment my hands were worse than before and I decided that I was not going back for more. I still have the hand pain and am not sure how to get rid of it. I do my housework in fits and starts, I can't do it all in one go now otherwise my hands give me hell. I am resigned to having painful hands now as part of this ongoing disorder.
My sister also has this condition and she is experiencing painful feet. Is anyone else experiencing this? I have read somewhere that the feet can also be affected with haemochromatosis. She finds it extremely painful and has to take naproxen to get any pain relief. I was given naproxen for my hands but I could not take it as it didn't agree with me.
I guess the doctors don't really know the full extent yet what haemochromatosis does to our bodies. I find it is all a case of let's try this and see what happens.
Marie
sheryl37154 marie86421
Posted
And it is very hard for researchers to get funding as HH (on its own) does not need pharmaceuticals to treat so there is no big pharmaceutical company to provide funds. Of course, it is costing us to try to treat all the extraneous complications ... but there is no proof.
That aside, check if your Vit D is ok - if not, use Vit D3 drops, they work best. Also, magnesium is often recommended. I am currently trying aspirin because my blood is often so thick and black it won't flow and dreadful to venesect. And this is me "deironed"! My level only goes up to <60 now before my 3 monthly venesection. however, my serum iron is always high - never goes down and that is telling me how much iron is circulating in my veins. so maybe it is not only what is stored in organs.
with my blood thinned down by the aspirin i did feel better, lighter (not dragging a ship's chain and anchor around with me), but gradually feeling worse again. that could be because i am due for a venesection - tomorrow to be exact and everything is aching, including my face (and teeth). so this is the last thing i am doing then off to bed, cannot function any more.
if only drs read this website, they would learn a lot!!!!
now="" before="" my="" 3="" monthly="" venesection.="" ="" however,="" my="" serum="" iron="" is="" always="" high="" -="" never="" goes="" down="" and="" that="" is="" telling="" me="" how="" much="" iron="" is="" circulating="" in="" my="" veins.="" so="" maybe="" it="" is="" not="" only="" what="" is="" stored="" in="" organs.="" with="" my="" blood="" thinned="" down="" by="" the="" aspirin="" i="" did="" feel="" better,="" lighter="" (not="" dragging="" a="" ship's="" chain="" and="" anchor="" around="" with="" me),="" but="" gradually="" feeling="" worse="" again.="" that="" could="" be="" because="" i="" am="" due="" for="" a="" venesection="" -="" tomorrow="" to="" be="" exact="" and="" everything="" is="" aching,="" including="" my="" face="" (and="" teeth).="" so="" this="" is="" the="" last="" thing="" i="" am="" doing="" then="" off="" to="" bed,="" cannot="" function="" any="" more.="" if="" only="" drs="" read="" this="" website,="" they="" would="" learn="" a="" lot!!!!="">
with my blood thinned down by the aspirin i did feel better, lighter (not dragging a ship's chain and anchor around with me), but gradually feeling worse again. that could be because i am due for a venesection - tomorrow to be exact and everything is aching, including my face (and teeth). so this is the last thing i am doing then off to bed, cannot function any more.
if only drs read this website, they would learn a lot!!!!
>
sheryl37154 marie86421
Posted
PaulRL70 marie86421
Posted
Interesting read! - Like most probs out there we think Dr's know the answers unfort a gd 70% tend to google just like we do when we first get something go a miss. You do occasionally get a gd doctor who knows his Or her stuff but they are far & few between - Indeed it was a locum who initiallypicked up on my iron levels being high late last Dec following me getting really bad reoccuring mouth ulcers - they did a full count thinking I was lacking in a B Vitamin - Actually I suffer from hyperlipidemia (Fluctuating cholestral) so I have been having regular quarterly full blood counts since 2006 - but unfort no doctors as ever picked up that my iron levels were high - extremly bad! Had meeting with practice manager and my own doctors about this - their answer was no one in practice as ever been diagnosed with this before - very vague answers and not satisfactory at all. - Is extramly worrying when you get answers like this as you end up playing doctor / medic yourself.
PaulRL70 sheryl37154
Posted
Absolutely agree with you! Not enough knowleadge on this! Forum as been a great help!
sheryl37154 PaulRL70
Posted
Sometimes a different dr will pick up something because they have fresh ideas - which kind of means your regular gp gets bored with you and does not try too hard. I have experienced the same.
Really, drs should do an Iron Studies test as a matter of course as it is a window to a lot of health issues. Exceptionally good drs do it - others don't even know the test exists and just do Hb or iron. CBC (complete blood counts) do not cover every test even though that is what they tell their patients. My gp tests all her patients now that I have 'educated' her. My husband's gp was already excellent and did Iron Studies on all his patients. My husband and son have HH too.
Good on you for approaching the practice manager. What a stupid answer. Nobody has been diagnosed with it because they have not tested for it. There are a lot of patients going undiagnosed.
What I usually tell people is to join their country's HH assoc and support them. They are volunteers working away at trying to help us. Find out what you can do to help create awareness of HH, and how to support them to get government funding for research. We are striving to get everyone screened for HH. This test is much cheaper than having huge costly health issues due to lack of or late diagnosis.
Get some booklets and brochures from the HH assoc and give them to the practice manager to give to their drs. Spread them around everywhere you can. Look for a support group close to you. If none, start one. Spread some leaflets around, take advantage of free advertising in a free newspaper, perhaps on your facebook if you have one, even if it is only to meet in a coffee shop to start with. I got a free room in a library.
We do have to educate ourselves to get the right treatment and be assertive as you have done. You will save someone from suffering like you did.
PaulRL70 sheryl37154
Posted
Another interesting read! - Always gd to swap ideas and how things effect you. What is strange is I'm getting rid of iron on one side of the Rm and on the other theres people having iron infusions - the human body is a strange subject! I've been told I won't go to the end of June even though I'm booked up until early July as it was 350 3 Wk's ago so they reckon its almost at target 50 - then its just obviously MainT - I hope to sign up to donate was told you can only do this 3 times a year but they reckon that should be fine. Any links to donating sites within London would be gd
Paul
sheryl37154 PaulRL70
Posted
Best of luck and health