I am new to the site, and thank goodness I've found it. Nice to know it's not just me.
When I was first diagnosed with ITP in 1996 post pregnancy, my count was about 80k. It stayed between 60-80 for about 14 years, but has been slowly decreasing over the last two years, and now seems to be between 20-50 (but spikes to 80-100 when I have antibiotics). I don't normally have any treatment, and have only had steroids 3 times since 1996.
My platelets have been about 20 since August and I feel washed out most of the time. I get hot flushes at night (no, I'm not menopausal yet) and have had a sore throat and swollen tonsils since August.
I live abroad (HM Forces posted overseas) and where I am they have no interest until the platelet count is less than 15k, and/or one starts bleeding everywhere. The doctor said that ITP has no correlation with fatigue and that I might be depressed (no); but that wouldn't explain why my platelet count seems to be consistently descending.
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scaryteacher
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The ITP Association commissioned someone to study fatigue and ITP and the conclusion was that ITP, and in particular low platelets, do cause fatigue in some people. I get hot flushes with low counts too, not just at night but in the day I'll suddenly go very hot and feel strangely weak. I haven't seen it reported by many so it's good to know I'm not the only one.
We don't tend to get treated here until either the count goes low or bleeding starts so that sounds okay. The treatments are usually worse than the ITP so best not to treat if you can get away with it.
If you have an infection which it sounds as though you do with your sore throat, that sometimes encourages the immune system to ramp up the number of antibodies attacking the platelets and so the count falls. Antibiotics might help.
In UK my GP used to panic if I went under 50; my Forces GP worries here if I drop under 30, but the Belgian hospital doesn't until 15. When I took along the fatigue report to my last haematology appointment, the teenager who was masquerading as a Doc said his boss didn't think it relevant and that there is no connection between ITP and fatigue. They were just not interested.
When I was diagnosed with this the choice was splenectomy or steroids, so I've avoided both as much as possible. With the downward count over the past two years, treatment is beginning to look inevitable, if only to keep my Mum quiet!
I was back in UK at my Mum's for a week in September, and I would just drop off for no reason - so my platelets must have been really low. I spent most of the week in a fog, and can't remember much about it.
I've spent years being OK with this - when my levels are between 60-80k I'm OK (I taught in secondary school for years without too much of a problem) but it's just this steady downward trend that is worrying me and I never know when they are going to dip so low that functioning becomes difficult.
Hi there I'm on romoplostim to keep platelets count up but unfortunately sometime the count drops if I haven't had injection I always no it's happening as one of the first symptoms is overwhelming tiredness and can't stop yawning so go back to your GP as these symptoms are being more recognised with ITP hope you get some joy
Hi Scaryteacher. The answers you have received prior are from two very experienced ladies ( Camdengirl and salmagal ) who have been through the mill with ITP. They are also regular contributors to this site. Their advice is sound and having had ITP for 20 years myself with a count around 10, would agree with all that they have said - of course being male I could not possible comment on the menopause and hot flushes!!!
Like you, I take no medication unless I need the count increasing to a safe level for a procedure. I refused to have my spleen out as there is no guarantee that it will work and I did not want to be on antibiotics for the rest of my life. Also I am lucky I do not bleed, only had one bad bleed from the nose. I do, like everybody, get very tired and the older I become, the more I feel it.
Keep on at the medics, many have a lot to learn and so few are really knowledgeable in respect of ITP. Do also join the ITP Support Association. They have a wealth of information on their website which you can pass onto the medics. You will be able to download the report produced by the top international haematologists who are the worlds top specialists in ITP (and the ITP support association were represented on this team ). I think you may also be able to obtain the report produced by Newcastle University into fatigue and ITP which was ultimately reported in the American Society of Haematologists (ASH) journal and accepted by them.
Finally, you are not alone as you have found out. Keep positive, maybe modify your life to be mindful of the dangers of ITP ( ie avoid dangerous activities,) retain a sense of humour and do not be afraid to keep on asking questions of the medics and asking them if they are specialists in ITP. There are specialist centers around the UK where the medics are really knowledgeable on ITP.
Hi Sailor (I am married to one) - we have a new military GP here who seems interested and liked both the PDSA site and the ITP Support Association one as well, and he seems both aware of and interested in ITP, which is hopeful, after 4 years of a GP who was lovely, but out of her depth with this.
I don't bleed either, or bruise badly, (but do have lots of what I suppose is blood staining on my feet and shins, plus the purpura rash when the platelets crash dive) so am asymptomatic, which may be why the Belgians aren't interested; but I was hacked off to be dismissed by a spotty junior doc who refused to take on board the fatigue report, or discuss any treatment, and ran back to his boss every 2 minutes to get an answer. I was hoping to see the organ grinder rather than the monkey, as I had been feeling really out of it with fatigue, losing track of what was going on, and feeling really lightheaded and woozy for about 10 days. The fact that my platelets seem to be bumping along between 20-30, when 60-80 was my norm for a very long time worries me too.
I got this when I was pregnant at 29, and I am now rapidly approaching 47, so have managed thus far. I do retain a warped sense of humour, and I do ask questions, but keep getting knocked back by the haematologists here. I see them again in January so I shall go armed again with the report, and point out vociferously that perhaps they should read it. It seems odd that they are unwilling to take on board here research from other countries. I was initially diagnosed by the wonderful Dr Copplestone at Derriford in 1995, whom I note is involved with the centre of excellence in Plymouth, and who overrode the obstetricians to allow me to have a normal delivery (and mopped me up and gave me tea when I had a melt down in his office); and I have to say, I am tempted to move back to UK just to see a consultant who knows their stuff as opposed to the fob offs here in Belgium.
Off to the new Doc tomorrow, so hopefully he may have a cunning plan, or someone he can refer me to, rather than the general haematology department.
It is so good to have found this forum, as it does feel rather isolating at times, and people who don't have this don't understand why sometimes I am crashed out, and others I'm OK.
Hi Scaryteacher. You certainly have the right mind set - keep it up and do not let the count get you down. Many specialist would say the count whilst being important, is only a guide and the symptoms of bleeding and quality of life are more important. Certainly I get the rash and itchy ankles. A bit of cream sorts that out PDQ and never think about the count until I have my annual check up or I need surgery. Whilst you may feel aggrieved by the Belgium attitude, I would welcome it personally and get on with my life. Provided you are aware of the dangers and know what to do in an emergency.
I expect you have read that medication is varied and what works on one will not work for another. Knowing that some of the medication is pretty awful, if you can avoid it - great. Why take what could cause other problems.
Nice to hear your new Doc is pro ITP support groups. The support group have invested a lot of money over the years and is continuing to do so. So much has been learnt by some very cleaver people in recent years and hopefully this will continue. There is a very close relationship between the american and UK groups and medics who work closely together.My own consultant acknowledges he is not a specialist and always call the Royal London for advice if he has a problematic patient not like some who think they know it all.
I am 68 next birthday, still working and travelling although I am cautious where I go just to make sure they have a good health system. My ITP started with a virus I picked up in the far east 20 years ago. My regular count is around 10 but has reached 27 on one occasion - hallelujah it more than doubled.
Hi Sailor - saw new GP today - he was happy that I don't take any meds, and wants that to continue, and keep them for if/when they are really necessary.
He also wants photos of the rash/blood staining on my feet and shins, as they darken when my count drops, and this would give him something to work from.
I suppose I should be glad of the Belgian attitude as mostly they over medicate here, so at least they haven't tried to fill me full of horrid stuff.
It seems to be case of keep on keeping on. The new doc seemed very keen on eating beetroot though as a superfood; got put off it at primary school, though I'll give it a try.
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