arguing GP's - RLS-iron: Please give me... - Restless Legs Syn...

Restless Legs Syndrome

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arguing GP's - RLS-iron

58anniem
58anniem

Please give me some guidance here? I am desperate! - as already mentioned in my previous posts, I went to a private GP out of desperation and she took the below blood readings. She said I was severely anaemic and needed a infusion of iron, she wrote to my GP. - see the results below:

My GP has totally rejected her claim that I am severely anaemic and says I am not at all and there is no haemoglobin result so she cant say that. He said my last blood test last November (10m ago) was fine and my haemoglobin was 13.7 which is normal. I have always had high feritin so nothing new and wont refer me to Haematology saying they would reject the referral. (he just puts all my symptoms which correlate with low iron - down to fybro and chronic fatigue) which is so frustrating( & lazy). He says not enough is known about those conditions so no treatment - sorry.! - I feel let down and totally confused as not medically minded. (dont want anymore medication as I can't cope with the side effects). I do want to push for the iron infusion if you guys think it would help?

I am now stuck in the middle and don't know what to say to the private Dr. She said in her letter to the GP that the test was limited due to funds - should there have definitely been a test on haemoglobin or do you think the results that are there are enough? .... was hoping for some advice on what to say to the private GP before I call here please?

Also, can I ask does augmentation ever go? I have reduced from 180mg of Gabapentin to 25mg slowly and have been on 25mg now for two weeks and wondered when I could stop it totally - feeling much better without it! - also have cut my rotigotine patch in half now for the last two weeks..... not such a confused zombie now and my RLS isn't any worse yet! - but still definitely there all the time as are the other symptoms of augmentation.

Many thanks for your time and knowledge - pls look at the following results

Annie

HAEMATOLOGY

HCT 0.415 0.33 - 0.45

MCHC (g/L) 342 g/L 300 - 350

BIOCHEMISTRY

Active B12 62 pmol/L 25.1 - 165.0

IRON * 5.4 umol/L 6.6 - 26.0

T.I.B.C 58 umol/L 41 - 77

TRANSFERRIN SATURATION * 9 % 20 - 55

FERRITIN * 298 ug/L 13 - 150

Optimum Ferritin level for females : >27 ug/L

Red cell folate 650 nmol/L 285.4 - 1474.7

<340 nmol/L is associated with folate deficiency.

27 Replies
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I'm sorry to hear about your GP.

Your options are to educate this GP, change to another GP who will refer you to a haematologist, or see a haematologist privately, I guess.

I'm not clear why your GP thinks you're not anaemic, your serum iron is lower than normal and your transferrin saturation is lower than normal. This would suggest a lack of iron.

It may be true to say that since haemoglobin hasn't been tested it's not possible to confirm you have anaemia, but then it's not possible to confirm you don't have it either.

Not allowing a haemoglobin test on the grounds of cost is inexcusable. There should have been a test!

Your high ferritin level could be due to inflammation so this result might be misleading.

As regards gabapentin, Please can you clarify? It comes in capsules of 100mg or 300mg. Hence I'm not sure how you manage doses of 180mg or 25mg.

Gabapentin does not cause augmentation so reducing it won't relieve it.

Rotigotine can cause augmentation and it will reduce as you reduce the dose. However, as you reduce the dose you will get withdrawal symptoms which will confuse things. These will not entirely disappear until about two weeks after you stop it altogether.

It is possibly a little unwise to reduce both at once. It might be better to reduce rotigotine only, first.

If you do eventually stop both entirely, then unless the iron is sorted out successfully, then your RLS will be uncontrolled.

58anniem
58anniem in reply to Manerva

thank you Manerva, how do you read the test? is the haemoglobin the magic number that is missing or would you read the test results I have shown to be sufficient to say I do have severe anaemia?

Manerva
Manerva in reply to 58anniem

Without a haemoglobin test it's not really possible to confirm iron deficiency anaemia or not. Simply put, if your haemoglobin is normal, you don't have anaemia, if it's low, then you have. Haemoglobin is made from iron, so if iron is low, haemoglobin will be.

Anaemia can be inferred from ferritin, but this can be misleading as inflammation can cause a high ferritin.

Since haemoglobin gives RBCs their colour, in iron anaemia they will be too pale. Therefore your skin may appear pale as will your fingernails. More significantly if you pull down your lower eyelid, it will be pale rather than "blood red".

Since overall your body cells, including nerve cells, won't be be getting enough oxygen you will feel a lack of energy. You will also get out of breath easily.

If you get a DIY "pulse oximeter", (they cost less than £10), you can easily test how much oxygen is in your blood, i.e. how saturated it is with oxygen. In health oxygen saturation should be about 97%.

I do see that the last time your haemoglobin was tested it was OK, but I can't see why it couldn't be tested again, just to make sure.

I've had mine tested 3 times in the last month!

58anniem
58anniem in reply to Manerva

Thank you for your great reply. I’m sorry on two counts! Firstly I only saw the first part of your first reply so asked the question again that you had already answered! secondly I said Gabapentin but I meant I’m in pregabalin which is definitely 25mg’s. Can u suffer augmentation from that? Good to know it doesn’t last too long - whether it be from rotigotine or Pregabalin. All I know is that my head felt like I had lost all coherence and along with no energy I was really scared. I do feel better from reducing so maybe I should keep on the very low doses of both? .....

I have for the last two weeks been taking Megamag night formula and Megamag calmeze - which does seem to have helped a little bit with the cramps and joint/muscle aches and heaviness. I also take naproxen when they are bad, the RLS seems to be less aggressive but maybe that’s just this week!!!

I am having another blood test in the morning so fingers crossed!! 🤞

Manerva
Manerva in reply to 58anniem

Pregabalin makes sense. It is more or less the same as gabapentin, so doesn't cause augmentation either. It can however it can cause fatigue.

Cramps and joint aches aren't really symptoms of RLS.

Good luck with the blood test.

58anniem
58anniem in reply to Manerva

Thank you Manerva 🤞

Suberino
Suberino in reply to Manerva

Hi Manerva, I've read that Pregablin can cause augmentation in about 2% of patients? (I'm on Pregablin and the 1mg Neupro patch. Both are doing very little to help and my symptoms are starting earlier. I realise that the patch is the most likely culprit if it is augmentation. I also know hell awaits if I come off it!)

I probably have to bite the bullet at some point and come off the patch but I have a job I can barely keep awake for already!

The fact that my research has lead me to doubt whether Pregablin is in fact a certainty for not causing augmentation just adds another variable to the mix.

Any thoughts gratefully received.

Sue

Manerva
Manerva in reply to Suberino

I do recall reading somewhere that pregabalin may cause augmentation in some cases but have never read a statistic on it.

On the other hand I have read that the chances of augmentation due to a dopamine agonist are nearly 100%

On probability alone then, if you're taking both neurpo and pregabalin then the chances are that if you have augmentation it's due to the neupro, not the pregabalin.

To add weight to this, one theory that's been put forward for augmentation is that it occurs when progressivley more and more dopamine receptor sites fail to respond. It has been shown that raised dopamine levels (caused by taking a dopamine agonist) and/or long term use of dopamine agonists can lead to "downregulation" of dopamine receptor sites =augmentatioin.

Pregabalin does not affect dopamine receptors in any way.

A further point is that with some drugs that suppress RLS symptoms, the symptoms can get worse when the drug wears off. This is known as "rebound" and it can be confused with augmentation. E.g. there is some controversy about whether Tramadol, the synthetic opiate, causes augmentation as is claimed, or in fact this is actually rebound. The cases of "augmentation" caused by pregabalin then may possibly be actually rebound.

I think it fairly safe to say then, that if you're suffering augmentation, it's due to the neupro, not the pregabalin.

I appreciate that it might feel very threatening, if you've read peoples' experiences of withdrawing from dopamine agonists, but from my experience, I would urge you to do this at some time.

Withdrawal effects can be minimised depending on how you go about withdrawing from neupro and may only be temporary. The end result of withdrawing in my case was a signficant improvment in qualoity iof life.

If you don't withdraw, your augmentation will continue and/or get progressively worse.

Suberino
Suberino in reply to Manerva

Thanks, Manerva. I hadn't heard about rebound. That makes sense.

I've done DA withdrawal - coming off ropinerole. I wish I had not been persuaded by a sleep specialist at Papworth to go on the patch instead. The thought of no sleep for nights on end during withdrawal is pretty grim - I am SO tired already with very poor sleep for months.

Mind you, it's 1.30am now and the RLS is not showing signs of settling down long enough for even a few minutes sleep so at this rate on or off the patch I could be up all night.

Hi, I’ll do my best to get my retired Haematologist husband to look at the results you posted & see what he says. Don’t know if he will as usually retired drs don’t feel it’s appropriate to get involved but I’ll see if I can get him to connect on the results later today

58anniem
58anniem in reply to Alison7

Alison7 thank you so very much, that would be hugely appreciated, as is the very helpful advice from Manerva. I’m now stuck between two GPS arguing and feel like I’m sinking, so some clarity to help me understand the results will help me know which Dr I should be listening to! .....

Thanks and best wishes

Alison7
Alison7 in reply to 58anniem

Ok. Here goes. Apparently the results are hard to interpret - and also now age 70 my husband says he has forgotten some of the fine details. Haematocrit is not measured as such but the machine does it automatically using a variety of parameters but these in a rough calculation would suggest an Hb around 13.5 he thinks. I presume private GP did the other iron parameters as Ferritin high to try to see actual iron status.

He says the TIBC and transferrin saturation should point in the same direction and don’t he thinks. The transferrin saturation at 9% he thinks is the one item which might suggest iron deficiency - but there is no suggestion of ‘severe anaemia’ - see above.

Basically these are not something that either GP could interpret without specialist input - a haematologist with an interest in iron status.

The solution if you can get it is to have the bloods repeated on Nhs - am assuming UK here - they don’t all need done & if I was the GP I would have asked the local haematologist on the phone what would be appropriate to do & then ask him/her to interpret.

The next challenge then will be to find someone willing to give you IV iron if you are indeed thought to be short of iron

And finally some of our RLS experts, especially in the US, are great at replying to emails. Dr Bruchfhurer in particular though I don’t know his expertese on Iron. There are iron guys at John Hopkins. They might assist in interpretation.

But you would then still have the challenge of getting local dr to agree & treat so repeating locally seems wise.

Perhaps you could ask these RLS experts advice & then go armed with their replies if need be.

But as above our basic advice is try to get your local GP to ask haematology advice & repeat what is advised.

Iron deficiency without anaemia can make one very fatigued so it’s just possible is contributing to your chronic fatigue.

Alison7
Alison7 in reply to Alison7

I should also add & sorry to Manerva see above, but you don’t have to be anaemic to be iron deficient in your body elsewhere. If you have iron deficiency anaemia the cause needs to be investigated as you can have poor absorption eg adult coeliac or be slowly losing blood from eg ulcers in gut. It is a criteria for urgent referral.

But you can be iron deficient without becoming anaemic. It just depends how low your iron is & for how long.your blood will tend to grab any iron going if available but there still might not be enough for elsewhere. Also of course you can be anaemic ie low Hb without being short of iron if other constituents needed to make Hb are low eg B12 or folate, not apparent in your results though

58anniem
58anniem in reply to Alison7

Wow! I can’t thank you enough! Pls also pass on my thanks to your husband. Yes I am in the UK and I do have another blood test booked for this morning. Will let you know the results. When I have those I will contact the john Hopkins guys and ask their advice. I my GP says it’s all down to fybromyalga and CFS so iron won’t help so your final comment about low iron but not anaemia is also very helpful.

I am sitting in bed now trying to psych up energy to start The day and am breathless even before moving! so that’s definitely not right. My usual severe RLS has not been quite as troublesome these last few nights and all I have done differently is take lots of magnesium sups......(RLS usually 9/10 but last few nights has been about 6/10 so a slight relief there.

With warmest gratitude

Annie

Alison7
Alison7 in reply to 58anniem

You shouldn’t be breathless with a normal Hb

Alison7
Alison7 in reply to 58anniem

What I meant was that if you’re not anaemic but are breathless then it suggests another cause for breathlessness

LotteM
LotteM in reply to 58anniem

Before they draw your blood, ask to see te list of parameters that will be assessed. As far as I know it is most informative to have a full iron-related panel at the same time, so not have to combine results from different days. It may take some arguing if you think something important is missing, but you don't want to end up where you were before - with incomplete information. Good luck. I hope you still get this in time.

Alison7
Alison7 in reply to LotteM

Good idea. I was hoping though the local haematolgist would advise 1st what he/she would like repeated. Unfortunately it's likely that the person who is taking your blood won't be able to alter what's requested as they are likely to need to be ordered by your requesting clinician.

58anniem
58anniem in reply to Alison7

Hi Alison7 thank you so much for all your help today. I will show results from today when I get them next week.

Now I think I understand that I have severely Low iron but am not anaemic - I hope that I might get a referral for a second opinion - could the breathlessness be down to severe low iron? or should I accept it’s all down to fybro?

Alison7
Alison7 in reply to 58anniem

Hi Annie, breathlessness can be caused by quite a lot of different things in different parts of your body. Low iron on its own can cause fatigue but not actual breathlessness. In your blood system only actual low Hb would do this. Fibro shouldn't either if you do mean actually being short of breath rather than fatigue. I would advise you see your GP about it. He/she should know how to ask the right questions and sort out the cause and work out if other investigations are required.

58anniem
58anniem in reply to LotteM

Thank you LotteM unfortunately I saw your message too late.

I’ll update when I get these results and hopefully I might convince the GP to refer me 🤞

Hi Annie - confusing iron panel - at least for me. Here is an article that might explain some of your numbers - the Transferrin Saturation is low as indicated. I do know that the % saturation is a calculation and refers to the amount of Transferrin containing iron. healthjade.net/transferrin-...

58anniem
58anniem in reply to DicCarlson

Thank you very much DicCarlson, that’s very informative - the info there is a bit too medical for me as a layperson I find it all hard to interpret But do get the gist of it I think! I will update next week when I get my results back from today’s blood test, hopefully it might show a pattern.

One thing I have learned is that you can be severely low on iron without being anaemic - didn’t realise that before - think that’s where I am.

People here take slow-release iron tablets to avoid side effects and gobble down lots of bromelain to lower inflammation. Look up Johns Hopkins on iron for RLS, too. You may need a new GP.

58anniem
58anniem in reply to Nora22

Thanks for that Nora22, I have started to take ferrous fumerate - 1 in morn and 1 early eve - are they good enough? - gentle iron? ...will take every other day as advised on here.

Would you advise something different? I don’t know bromelian so will investigate.

I will definitely look into changing my GP, - Awful guy!

Gentle iron is good, but slow-release iron is a little better as it will not dump a bunch of iron into your system at one time. It's,also quite inexpensive and accessible. Bromelain is in the cores of pineapple. It helps eliminate inflammation and if you're not allergic to pineapple you can take as much as you need. It is also not expensive. Good luck!

I have iron deficiency anemia related to gastric bypass surgery years ago. When my iron gets low, I have horrible RLS in both legs.. sometimes even in my arms and in my chest. I cannot tolerate oral iron therapy so my PCP referred me to a Hematologist/Oncologist and that’s where I go for labs and IV iron infusions.

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