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Saying it how it is...assertiveness & honesty with symptoms

As a result of feeling encouraged at the recent Living with MPNs day in London, to keep a 'symptoms diary', I decided to ring my haematologist on Monday (which is always recommended to me should I have any concerns). This was because, on Sat 14th Nov, I think I saw about half of the whole day. I slept on the 3/4 hr coach journey on way up, nodded off 3 times in the lecture theatre at the BMA (apols Prof Ruben Mesa) then had a nap on return to hotel and finished the day by sleeping through half the play I wanted to see in the evening followed by 8 hours solid sleep. This ain't right-I'm losing not only time but my quality of life. So, spoke to a different haem than my usual who's organised yet another blood test to check my thyroid. But the bit I want to pass on is the Vit D recommendation. He suggested I take a decent strength as the lack of sunlight at this time of year can result in the drowsiness I'm experiencing (it feels more like fatigue to me) and as we are all now so much more aware of the dangers of too much sun exposure, it can result in a Vit D deficiency. So I bought a 1000 strength yesterday & am going to give it a go-anybody else take it? Just glad I rang & spoke to this guy as we can all just think our symptoms of the illnesses or meds are 'normal' when, sometimes, there can be an alternative solution. Stay well & warm, Poll X

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Now ,,why not try Pomi.T ..as a suppliment it's safe tested and I feel so good taking it every morning ..it tops up all those good things we don't always eat ..give it a go ..diet can affect our strength and energy ...feed yourself well ..twinkly. X


Hi Poll , , you're right to ring and get checked out as your body tells you when you're not tip top. Sleeping too much is an indicator for those of us with MPNs of poss low Haemoglobin, was with me a couple weeks ago, nodded off a few times en route to Manchester which I don't normally. Good idea to check Thyroid as a precaution. I think it's a good idea to take vitamins and will be interested to find out if your vit D perks you up. I recall it being mentioned before on the forum and will try a search for it. . Might have dreamt it though. . x


Hi Polly P V,I am prescribed a strong phial of vit e every 3months by my excellent French G P.No shortage of sunshine here,but of course lots of times it's too hot to be out in even without my P V.

Can't say I've noticed an increase in energy tho,sometimes as now,I wonder where the fatigue comes from...the disease or Hydrea.Hope it helps you .anything is worth a try ..Keep well,hope you are missing the storms.x


Sorry meant vit d !!! Brain fatigued as is body!


Good Morning Polly!

My profession as a photographer, digital technician, retoucher and so on has kept me indoors daily from 8 to 5 for a good portion of my working life and in subdued lighting conditions (away from windows) for the most part. I would add that living in Wisconsin, USA would be considered a somewhat northern climate, so the tendency is to wear more clothing when outdoors, either to protect against chilly weather or to protect against sunburn when it's hot outside. Needless to say, all of this can add up to a considerable lack of good ol' Vitamin D! I have had my Vitamin D levels checked for years whenever I need to go for a blood test and I have found that (for me) taking 4000 I.U. every other day or 2000 I.U daily has kept my levels right in the middle of where they need to be. I did have a nutritionalist tell me years ago that Vitamin D is one of those vitamins that is a challenge to keep at sufficient levels in the bloodstream. Regarding your difficulties with fatigue. I have never heard that a person would experience fatigue from low levels of Vitamin D; quite the contrary as a matter of fact. My wife was prescribed with taking Vit. D3 at 25,000 I.U. daily for 10 days a number of years ago to get her levels to where they needed to be. One of the indicated side effects that she did indeed experience was fatigue. JediRejects recommendation to see how your thyroid is doing is spot on. I'm hypothyroid and could actually fall asleep at work if I was in subdued lighting and I sat down for a 10 minute break! Additionally, a diet high in carbohydrates will make one lethargic. And of course having a blood disease could be the source of who knows what woes; you're doing the right thing in keeping a symptoms diary. Be an advocate for your own health, knowledge is power and put your doctor(s) to work in having them track down your fatigue. I am envious of the fact that you could travel to one of these MPN conventions; most of the gatherings here in the states are either on the west coast or the east coast! I would have loved to have heard Ruben Mesa speak and answer questions in person. To your good health, Dave

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