I'm new on here - Susiecarer

Hi All, my husband has within the last few days been diagnosed with CLL. He is 69, 70 in May. Blood tests have revealed that he has iron deficient anaemia and is taking ferrous sulphate for this. No prescription but local pharmacist was kind enough to sell me it. Due to no idea as to what dose he should take, he started off yesterday taking 3 but appears to now be suffering with a bit of diarrhoea, we have now decided it may be better to drop down to 2 tabs over a -12 hour period. Has anyone else taken these tablets and had the same trouble. At this moment in time we have no idea about treatments etc. but once all tests are done can someone give me some idea how long afterwards we can expect treatment to start. Thankfully we are Oxford based so have some of the best hospitals locally.

22 Replies

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  • Welcome... I would recommend Dr.Anna Schuh... noted CLL specialist ...

    oncology.ox.ac.uk/research/...

  • A very warm welcome Susie and I'm glad you've found us at an intensely difficult time for you and your husband.

    If the iron deficiency was found during the blood tests, I'm baffled as to why your GP hasn't arranged a prescription with suitable levels of medication. Ferrous sulphate can sometimes cause abdominal upset as explained in this link;

    nhs.uk/Conditions/Anaemia-i...

    I think you need to ring his GP ahead of any haematological appointment and ask for advice on this particular issue. He may need something different.

    I'm glad you have excellent specialists locally and usually a consultation is made with a haematologist to discuss the CLL diagnosis. Tests, blood results and your husband's general presentation will give the CLL staging which very well may be extremely early stage. Should that be the case you won't be talking about any kind of treatment for perhaps a very long time (and in a third of the more indolent cases, never!).

    Your husband will be on what's called Watch & Wait which usually involves seeing a haematologist every 3/6 months whilst the CLL is plotted and trends observed. It's very early days to try and take in all the technicalities but pay close attention to the ALC (absolute lymphocyte count) which can signify disease progression as it climbs.

    I was diagnosed 5 years ago in May and am still untreated though not expecting to be able to dodge it completely.

    The main thing is staying calm at a time when your insides may be in turmoil! Think carefully who you want to disclose this to at this stage because it can be a very long and uneventful condition initially and people find it difficult to comprehend that.

    Others will be along to support and advise but please ask anything you want. No question is out of bounds.

    Hope you are both coping and I hope his first consult goes well and indicates a very early stage CLL with no obvious, troubling symptoms.

    Best wishes,

    Newdawn

  • Hi Newdawn,

    This was the Registrar who told him to go to pharmacy and get some iron tablets, I spoke to the pharmacist who gave me the sulphate tabs for him. I shall speak to our CLL Clinical Nurse Specialist on Monday and get her advice. He is due to see Dr Schuch in about 2-3 weeks I believe, but no definite date yet.

    All we know at this moment in time is that his WBC was 110,000

    and his haemoglobin was 8.5. We were told on Friday about the iron deficiency after our visit to the local specialist hospital on Thursday afternoon and this was after we saw a Specialist Consultant privately on the Wednesday who confirmed all suspicions.

    Just hate the waiting game.

  • Sounds like you're being very proactive and on the ball though Susie. Having Dr. Schuh is a real result and should certainly instill confidence at receiving the right advice and treatment.

    I can appreciate how difficult it is waiting for appointments but having had the opinion of a specialist consultant privately, there clearly wasn't felt to be any immediate risk. I think it's a good idea speaking to the specialist nurse ahead of time though about the iron deficiency particularly as the over the counter meds are not agreeing with your husband. I hope he's feeling well generally though something must have taken him to the doctor initially or perhaps it was a routine blood test for something else.

    Let us know how things go. You could always chase up the appointment date with the secretary.

    Newdawn

  • Yes he was on levothyroxine since beginning of November, went back to GP to get repeat prescription as we were meant to be on a cruise sailing from Peurto RICO! He told the GP how he was feeling, who then requested FBC and low and behold he gets a phone call about his WBC and here we are.

  • A high WBC is not a trigger for treatment - the highest that I know of being 1,400. Quite a few of our members have higher counts than your husband. Haemoglobin staying low (below 10) due to CLL is a treatment trigger however, but that's different from iron deficient anaemia as Jm954 has explained so well.

    healthunlocked.com/cllsuppo...

    As has been mentioned, you've posted using the default setting which enables everyone on the Internet searching for key words in your post to find your post. That can help others with CLL and bring them to our community, but if you desire privacy (or other members hold back information for this reason), you (or an admin) can edit your post via the 'v' below your post to make it visible to 'Only followers in my community'. Your choice.

    Neil

  • Susie all I can say is that you are in the best of possible place to receive care for your husband. The team at The Churchill hospital will make sure your husband is given the latest treatment suited to him but hopefully he will not need any treatment for his CLL for a long time if ever, hopefully his iron deficiency can be rectified quickly.

    My husband is a patient of Dr Schuh and her team and was on WW since 2008, he is now needing treatment and the care and support from the whole team is amazing.

    Best wishes to you both.

  • Hi Susie,

    You may wish to try an iron supplement called Proferrin, as it is much more easily tolerated and absorbed well. Your husbands hemoglobin will hopefully rise faster than on the other iron supplements. Just to note that coffee, black and green tea, and calcium interfere with iron absorption, so give a few hours between.

    I am wondering if your Gp if monitoring you husbands blood levels for thyroxine since he only started the drug in November. They are usually monitored before a repeat script is required to make sure the dosage is correct or needs adjusting. Also, do not take iron supplements and thyroxine at the same time, as absorption in interfered with.

    It's a difficult time right now for your husband and yourself but sounds like you will be in good hands with the excellent CLL doctors you will have access to.

    Sandy Beaches ( West Coast Canada )

  • Hi SandyBeaches

    My husband spoke with his Clinical Nurse this morning, she checked that the dose ferrous sulphate 200mg he was on was okay. Thankfully she phoned straight back to say all was well.

    More blood tests on Thursday and she seems to think it will be 2-3 weeks before he starts treatment.

  • Hi susiecarer

    Don't be alarmed if your haematologist suggests a blood transfusion. They are given here when counts go below 10 and they really do help.

    Are you able to lock your posts to our community, otherwise open to all on the web.

    Best wishes

    Bubnjay1

  • Hi Bubnjay1

    I hope so,, I receive all the supportive messages via email. Not very good with technology I'm afraid .

    A blood transfusion was mentioned .

  • Hi again susiecarer

    Technology, you will get there I'm sure, the more you do it the easier it becomes.

    The transfusion will make a noticeable improvement.

    Have a wander around the site, pinned posts have some good information, coping strategies written by PaulaS for newly diagnosed is really helpful.

    Best wishes

    Bubnjay1

  • good luck to your husband. I was asked to take Iron supplements twice a day for my overwhelming fatigue though I am not anemic and am feeling much better two months on

  • I hope you don't mind me asking this, but was anyone else's WBC as high as my husbands.

    Also totally confused about what he should and should not eat. Could someone perhaps give me the dos and donts. We have always had a very healthy eating regime as well as lifestyle, although he eats full fat butter and occasionally a couple of squares of dark chocolate.

    He will speak to his clinical nurse specialist sometime tomorrow regarding the iron tablets.

    It's all so confusing at the moment.

  • Susie, lots of people with CLL have WBC as high and higher than your husbands but don't need treatment yet. Regarding diet, I would say a balanced diet of whatever takes your fancy, don't worry about the butter and chocolate - enjoy it!

    I'm a bit concerned about his iron deficiency anaemia though as it's very unusual in men unless they have blood loss somewhere. Bleeding from somewhere along his gut needs to be excluded. Iron deficient red cells are small (less than 80) and thin (less than 27) - it's called hypochromic, microcytic red cells and normal red cells are normochromic (between 27 and 32), normocytic (between 80 and 99). The anaemia normally associated with CLL is normochromic and normocytic because the anaemia is not due to any deficiency but a lack of capacity to produce them due to the CLL cells crowding out the bone marrow.

    Fe deficiency anaemia is a separate condition that needs to be investigated and not just treated. Hope this information helps and I wish you the very best of luck. You're in a good hospital with excellent CLL doctors.

  • Thanks jm

    They did say the anaemia would need investigation perhaps endoscopy but with the iron tabs they want to see if level comes back up as they need to know if this is caused by his WBC as well, guess you would call it "process of elimination"

    All we were told last week that haemoglobin was 8.5, she nevered mentioned any numbers when she phoned hubby up on Friday.

  • Hiya, it should be clear to any haematologist if this is iron deficiency anaemia or anaemia due to his CLL. It will definitely need further tests and investigations, not just treat and see if his Hb comes up as that doesn't tell you why he was short of iron in the first place and could take a month. You don't say if he has arthritis or any chronic inflammatory illness but in severe cases that can mimic iron deficiency regarding red cell numbers. Needs to have Fe, TIBC, transferrin, Beta2micro and CRP as well as the endoscopy. Sorry if I sound bossy but it's important!

  • Hi Jm

    No he has no other ailments. In fact the specialist consultant we saw privately on Wednesday, actually said he knew how healthy my hubby was because apart from blood tests he had in October 2016 there was no other medical records for him. You don't sound bossy at all so please don't think that, very helpful is what I would say.

    Can I also ask, yesterday he suffered pretty badly with a tummy upset from the iron tablet, which I think we have now sorted, is he ok to take Imodium to stop any upset. He took 2 melts which cleared it up.....

  • Ferrous sulphate can cause pain, nausea and commonly, constipation so check with doctor or pharmacy before taking imodium which could make it worse. Some of the other iron preparations, eg Ferrous fumarate, ferrous gluconate are tolerated better.

    Still need to have those tests done as there are rare conditions where you can appear to be short of iron but actually have too much and too much iron is toxic! Hope all goes well, please keep us updated..........

  • Hasn't suffered with constipation, it was the opposite, but with only taking 2 tabs over a 12 hour period he doesn't seem to have had a problem today.

    I have noticed though that it seems as soon as he eats a few minutes later he's on the loo. Then I get a report of how his bowel movements have been.

  • When I started on iron I too had terrible nausea, abdominal pain and one day vomited. But within a week and only taking with food, this resolved.

  • Hi Susiecarer,

    I'm a "carer" as well. I've no experience with the iron concerns.....but I welcome you to his amazing forum. You've already received some great advice and support.

    Keep up the fine work with your caring!

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