I have a question about LDH (Lactate Dehydrogenase) I believe this an enzyme test that is found in almost all body tissues. In my research I found out this plays an important role in cellular respiration, the process by which glucose (sugar) from food is converted into usable energy for our cells. This test is always carried out when I have my regular blood tests for platelets ect. The normal range for LDH is (240-480). my latest result is 758 U/L, classed as high. This test signifies tissue damaged, apparently further testing can be done to find out what body organ is where the damaged tissue is. Up till now I have not had this test. I will ask my Haem next visit.
My question is, is there anything we can do to prevent this tissue damage?
Like others have also mention recently ET seems to effect kidney function, my GFR is low 63 ml/min should be >89. Platelets sitting at 625. <400.
Apart from those results, I am all good!! which I am thankful for.
I have just won a trip to Fiji with my man!! from my local super market which was very good news!!
Hi Lyn, I think that's an excellent question. Maybe you could ask Maz to ask Professor Harrison? Honestly, the complexities of this condition!! I only ever have a full blood count at clinic. I did have kidney and liver function before commencing HU, never had an LDH test though.
Hi Lyn, I did some research on this some time ago and spoke to my haematologists about it. Like you, I was concerned about tissue damage and my high results used to scare me (mine were much higher than yours at the time, around the 1500 region). And like you, I have a slightly impared kidney function.
My personal research did not get me far because much better understanding of various scientific disciplines is necessary to fully get a handle on this. My doctors told me that LDH does not have a prognostic value and in that sense I should not get too worked up about it. My levels fluctuate between 800 and 1500 which would indicate, to my non-scientific mind, that something affects them. The question is what. According to my research, LDH becomes high in cases of heart attacks and similar heart problems where, clearly, there is significant damage to the heart. Our own high levels indicate damage to organs and other tissues, which is clearly the result of our blood deficiencies. I think that this is one of the indicators of how well we are doing, not in terms of general wellbeing but in terms of the effects our blood malignancies are having on our organ tissue. However, not a lot can be done about this particular indicator because the underlying causes are complex and numerous, mitochondrial function being only one of them (which in itself is not a cause but an effect).
I tried to monitor sugar intake (not just refined but all, including fruit and simple carbs to restrict glucose supply to mitochondria) to see if this would have an effect on the levels but it didn't; I then thought it's the oxygen (which it probably is) in which case I can do nothing about it because it is the level of my haemoglobin which affects it. All this is of course a very amateurish approach and, short of taking a degree in biosciences, I don't think I will be able to solve the this conundrum. So I just stopped worrying about it and moved on to another obsession (which now is inflammation). I still don't like to see high levels of LDH but it doesn't scare me witless like is used to. Go to Fiji, which sounds wonderful, enjoy yourself and post us a couple of pics when you get back. I am sure your DHL levels will come down due to relaxation alone. Have a lovely time! x
Hello there...I have had 2 spikes in my Ldh levels. The first was after my strokes and the second was after my heart attack. I've been told that it is a sign of tissue damage and a way of telling if the disease is "in control". I had one other time where the number creeped up and it was true that at that point my disease was not responding to treatment properly. I find that if my disease is being managed properly, my ldh stays down. There is nothing extra that I can do to keep it down. Hope that helps shed some light. Enjoy that fab trip... can I come along to carry your bags?
Hi Lyn, i have the LDH ,test but im never told what the level is ! i will ask next week when i go back to hospital , i like you am on HU because of age im also jak2 pos and ET ! well done for winning a lovely holiday , that can only be good for your health eh regards Holly x
in reply to
Hi Holly, I always get a copy of my blood results for my own interest, mainly watching those sneaky platelets!!! haha Mine continue to decrease, 625! last time. I haven't started HU, just on aspirin 100mg. long may it remain like that.
Holly did you read Maz's reply? re LDH from Prof Harrison. Maybe not to get to overly concerned about LDH levels.
So great to have this resource that we can tap into!
Hi Lyn, I asked Prof Harrison for you and she has said:
LDH does not necessarily indicate tissue damage especially in the MPNs. It can be chronically elevated in all of these conditions. Suggest however this is discussed with their team so it will be taken in context.
Hi Johan2021, I am sorry but I don't know. I would advise that you speak with your doctor about this and explain that you are anxious. Best wishes, Maz
Thanks Maz, that's lovely news to hear!! Just me trying to get my head around all these different blood readings. results. Thanks Lyn. Thank you to everyone else for their replies. Very appreciative.
Hi Lyn no i havent read report but will do , when i was seeing the registra she always told me what my platelets were , but the consultant doesnt so i will ask more ,when i see him wed Take care thanks Holly x
LDH can be used as a marker for several things, such as cell turnover rate, cytotoxicity, tissue damage, etc.. LDH tests are often applied in cancer since cancers result from uncontrolled cell replication (high cell turnover rate = high LDH), meaning a high LDH can sometimes be used as a diagnostic marker for some cancers.
I have seen many people post in this forum that their LDH levels have registered as high. I have also seen some post that their LDH values either tested normal or have fluctuated in and out of the normal range.
My guess is that LDH is often tested with MPNS since it probably serves as a somewhat useful marker for disease progression (progression=increased allele burden=increased cell turnover).
My understanding is that it is somewhat common, but not always necessary, for LDH to be elevated with all MPNs, including ET, particularly if you’ve had it for a longer amount of time.
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Waiting for diagnosis: ET or Pre-pmf
Slightly disconcerting review
Potential ET diagnosis 
Delaying Treatment No More - Pegasys, here I come.
