newly diagnosed

[thorp]

living with Haemochromatosis

[Joolsg]

Hi and welcome. As you have haemochromatosis, taking iron supplements or having an iron infusion aren't options.Madlegs has the same conditions.

What symptoms do you have and what has your GP prescribed or discussed?

[Madlegs1]

There is a Haemocromatosis site on the HU set up.If you have rls and high iron levels, then iron supplementation is not for you.

There is a very good site for all matters related to iron

The Iron disorders institute. If you Google it. They have lots of advice and information.

Otherwise, let us know your particular concern

[Hidden]

I'm sorry to hear you have Haemochromatosis it is a particularly nasty condition to suffer which modern medicine doesn't seem to have come up with an effective treatment for.

Presuming you also have RLS on top of that is horrible. No truly effective treatment for this either.

I can really sympathise with you then. What a position to be in.

I'm afraid it's unlikely that anybody on this site can offer any help with haemochromatosis, but if you wish may be able to help if you're struggling with RLS.

If you do want some help, please say more about your current symptoms and any medication you're taking. ANY medication for RLS or not and whether prescribed or otherwise. Otherwise any suggestions you get may not be relevant to your situation.

Note that anything you write is anonymous and the site has confidentiality rules.

[thorp in reply to Hidden]

thank you all very much for your very helpful posts I am on 50mg pregabalin and 0.75mg clonazepan per night

I am hoping,once things settle down a bit, to try and cut back on the clonazepan to say 50 mg as I think this drug is too powerful and dangerous Thank you again

[Hidden]

Please clarify, you say you're going to cut down the clonazepam to 50mg. Do you mean you're going to cut down the pregabalin?

Or have you got the dose of clonazepam wrong, 50mg is an overdose.

I can only say that if you're thinking of cutting down either of these two drugs, then I suggest you cut down the clonazepam. Of the two clonazepam is the least effective for RLS and possibly the most dangerous.

As you've only just been diagnosed than I'd say that possibly the pregabalin hasn't begun to work fully yet as it takes up to 3-4 weeks to be effective.

In addition 75mg is only the starting dose and the dose has to be increased until it's working. If the 75mg works, this is great, but unusual, it usually takes at least 150mg to work.

I can't tell if 75mg is enough for you as you don't say if it's working or not.

If you stop the clonazepam, then you may need more pregabalin.

I have to say that if you think you can reduce the dose of either when things have "settled down" you may be sadly mistaken. Things will only settle down because of the drugs, if you reduce them, things will get worse again. These drugs mask the symptoms they aren't a cure.

A further point, is that I can't make any judgment about how severe your RLS is. If it's not particulary severe then you shouldn't be taking drugs, you should try other non-drug treatments first.

will write more later.

[thorp in reply to Hidden]

sorry my bad typing

I want ,if i can, to increase as you suggest the pregabalin and to reduce the clonazepan from 0.75 mg which i am taking now to 0.50mg

Before starting this combination I started with only 50mg pregabolin and then increased this to 100mg.But I got aches and pain s and became verhy teary so my GP switched me to ropinirole. But that made me itchy which apparently is a sign of possible allergy.So I was switched off that onto clonazepan and the pregabolin

I am classified as serious RLS with problems every night and sometimes into the day

I want to try and find out the cause of my LS if that is at all possible

I know this is very complicated but I have identified two possibilities

I have been taking omeprazole for gastric reflux for at least ten years now and I think that there is some research suggesting that this , as a proton pump inhibitor ,may be causing me RLS problems.

The alternative may be a H2RA drug, but again, research suggests this may also be tricky with R LS

So i have asked my GP to check this out with a gastroenterlogist

Secondly I have been diagnosed as hypothyriod.

Yet some of my blood results show me as high,for example free T4 as 14.6.

But my TSH is normal at 0.72

I know soem suggest there is a link between too much thyroxine ie hyperthyroidism and RLS so I feel that i maybe should pursue this line a little further too

What do you think?

[Hidden in reply to thorp]

Complicated.

Primary RLS is genetic in origin and is due to an iron metabolism dysfunction.

So called secondary RLS can have a vraiety of causes and thryoid dysfunction is one of them.

However, it has been shown that even with secondary RLS, there is a genetic susceptibility.

HYPOthyroid is usually indicated by a HIGH TSH, So unless you're taking thyroxine, having a low TSH and high T4 is unusual.

If you've only just started thryoxine it does take while to get the dose right.

If hypothyroid is a factor in your RLS then hopefully getting your T4 TSH stabilised will help.

Proton pump inhibitors do make RLS worse and so do H2 inhibitors. This however seems to be dueto them preventing iron absoprtion, whichnis NOT a problem in your case.

[thorp in reply to Hidden]

thanks again

very helpful

[Hidden]

Later.

The first treatment for RLS is iron therapy as iron deficiency is the main cause of RLS.

Read this link

sciencedirect.com/science/a...

The second thing to is identify any aggravating factors that might be making your RLS worse and if possible avoid them.

Medication is really a last resort.

If you read some recent posts from the last few days, there is quite a bit about these two things.