Prior To Being Diagnosed With ET.: Has Anyone Ever... - MPN Voice

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Prior To Being Diagnosed With ET.

Mycancerconcern1 profile image

Has Anyone Ever Found Out Exactly How Long They Have Actually Had ET Prior To Being Diagnosed. I have had almost all the symptoms you get when you have ET since around 2008 symptoms have become a lot worse over the past few years before i started the Hydroxycarbamide. There is days i would not even think about driving my car now as i am so fatigued.

17 Replies

Hi,mc1,i think a lot ov people here like me believe we've ad it a lot longer than our 'official diagnosis'when looking back on blood tests u wud assume gps wud ave picked it up but a lot ov them ave never even heard ov it or know nothing what so ever about it.The only shining light is finally getting a diagnosis so treatment can begin & 2 prove we wasn't imagining the sometimes extreme symptoms! Bws.tico.

Hi Tico your right most GP's dont know anything about the illness and treat you for something completely different. In this day and age you would think that this illness would be on some kind of symptoms chart were a GP can look at this and see all these rare illnesses and the symptoms. This way more people would be tested and diagnosed earlier if the information was there for the GP's to see. To me it would make sense for a GP to have an illness against Symptoms chart at hand that they can access on there computers. I believe they will already have this in place only the rare illnesses must be missing from the chart.

I was diagnosed with ET in 2016. However, on looking back at an old blood test from 2005, I see my platelets were already above range then (451), but the GP didn't think it was a problem. Interesting about you feeling too tired to drive some days. I was just like that too, even got to the point I was going to have to stop work. However, my blood test also revealed I had low normal vitamin B12 levels - not bad enough for GP to do anything , but these blood tests all well documented to be inaccurate. I self supplemented with high dose B12 and have never looked back. Full of energy again and I can think straight - no more brain fog.

Mycancerconcern1 profile image
Mycancerconcern1 in reply to

Hi DebraNL. Thanks for the reply. I have been more fatigued over the last year than i have in recent years were i have just struggled on working through it. I was in Oil and Gas Employment and when jobs became harder to get because of age etc i started my own self employed driving business which also involves some heavy lifting work. I have now had to stop work as i know i am to fatigued to drive any distance at least 4 days out of 7. When i do feel i am ok to drive i cannot manage the lifting side of my work so i have had to call it a day. At the moment i am just surviving off my savings but i am going to have to look at claiming some sort of benefit as the savings is going down hard now that i do not have an income coming into the house and it does not look like i am going to feel any better any time soon.

in reply to Mycancerconcern1

Has your GP checked your B12, folate, iron and thyroid (TSH, FreeT4, FreeT3, and thyroid antibodies)? It is possible to have more than one condition at a time. A lot of the symptoms of ET are similar to other conditions.

More than 95% of my "ET " symptoms went with treating these other conditions.

Mycancerconcern1 profile image
Mycancerconcern1 in reply to

Hi DeboraNL they have been checking me for everything. The GP said there was only 2 blood tests they have not done yet which they are doing this week so i will see what comes out of those.

in reply to Mycancerconcern1

Make sure you get your own copy of all your blood test results. Its worth Checking to see what they have actually tested you for. You are legally entitled to them. Important to note that you can still be "within range" for the above issues, but still have symptoms. Good luck !

Mycancerconcern1 profile image
Mycancerconcern1 in reply to

Thanks DebraNL i will be asking for them all dated back to 2008 along with my GP reports on the symptoms i had given them and what they have treated me for if i can get them off them.

Garden987 profile image
Garden987 in reply to

Hi. Interesting about maybe having other conditions. In 2000 I had a very severe chest infection whilst in Canada. When I came home I felt dreadful and couldn't walk I felt so ill. MY then GP kept trying to give me a tidepressats. Eventually in1914 GP reluctantly agreed for a blood test. It was discovered that I had ET. The following year I was diagnosed with CFS and from masses of research have discovered that there are many similarities with ET and CFS. My heamotologist insists my fatigue and generally feeling rubbish is connected to "other conditions"This is no help to me as there isn't any cure for either disease. MY point is that it is well known that ET and CFS can be caused by an infection but no tests have been carried out. Two Unknown conditions but similar. My GP has no experience of either condition. All I know is that since the infection Canada I have felt very unwell and am now finding it almost impossible. To function. Have seen a .Clinical Psychologist from time to time. It all she says is there is no magic bullet.

I am virtually housebound now ans if it is CFS there is little that can be done. Do go and make a noise with your GP. They really don't understand these conditions but you must look into things further. I hope you will find a solution or at least someone who can guide you in the right direction. Wishing you well and hoping you find the appropriate treatment. Mary

in reply to Garden987

Sorry to hear that Garden987.

Just read this article in Medical News Today, 23 March 2018

"Chronic fatigue syndrome remains mysterious to both healthcare professionals and researchers, who have so far been unable to pinpoint its underlying causes. A new study reveals that there may be a link between the condition and having low thyroid hormone levels."

I have been trying to find the reference (unsucessfully) but i do remember reading a book by a GP who stated that before the invention of the TSH test and the synthetic thyroid drug in around the 1970's, CFS/ ME etc did not exist, as Doctors would have treated it as hypothyroidism based on symptoms with natural Desiccated Thyroid - (which had been safely and effectively used for 80 years). Within 10 years there was a significant number of patients diagnosed with the "new" condition CFS/ME/Yuppy flu - whatever you want to call it. The GP just considers it undiagnosed hypothyroidism.

The range for the TSH test is rather odd. In some countries you would be considered hypothyroid if your level was above 3. In Uk, it generally needs to be above 5, but in reality above 10 before they would actually treat you due to NHS cutbacks. Most thyroid experts (i.e.: not NHS) consider that ideally your TSH should be around 1, and your free T4 and freeT3 towards the higher end of range. The ranges are quite big, so you could be towards to lower end with T4/T3 and higher end with TSH and the doctor will say you are fine - take an antidepressant. But it is still possible, and not uncommon to have hypothyroid symptoms even if you are within range. Reading your symptoms, I would definitely get my thyroid checked out. Get a copy of all your blood test results going back as many years as you can, so you can compare.

Then seek advice on the thyroid site.

in reply to Garden987

Garden987, here is the link I mentioned re: chronic fatigue syndrome,

Garden987 profile image
Garden987 in reply to

Hi Debra. Thank you so much for your reply. Have just tried to read and assimilate it but will need to do it again. I wonder if these kind of tests and specialists exist here in the UK. If what he says is true then maybe there is hope for us. Am waiting to be referred to a CFS clinic (Hope Wales will fund it) and have read that it's very difficult to have an appointment. This together with ET is almost unbearable as you know. Thank you again and please take care. Mary

in reply to Garden987

Wishing you all the very best.

I sincerely hope all goes well for you. The fatigue is first and foremost in my mind. I feel like sleeping for the entire day upon waking but have intermittent sleep in any case overnight.

The way I deal with it is to make myself walk on rising for at least 30 minutes and if my little 'rodent' is in a good mood, over one hour. It's amazing how this changes my mood.

If I don't do this first thing I cannot bring myself to concentrate on anything for the day. If I do, I have an even chance. the fatigue is always there however, ready to take over immediately I give way.

Good luck.

Hi PenelopeMK. I also go for walks to try and keep exercised and pull myself together which does help to take your mind off things. The walking bit is ok until i get home and sit down and i am just drained when i get up again. I have bad shoulder and neck pain as well as the fatigue which i think has something to do with the illness but the doctors dont seem to be interested in that even though i keep mentioning it to them.

I have fibromyalgia as well and therefore probably suffer similarly but yoga(when I'm not being inactive mentally and physically) does help. I also play loads of board games or anything that uses my brain to keep my mind off the subject. I find that if there's no space in there for thinking, I get along a lot better.


JackLina profile image
JackLina in reply to

I suspect I had it more than 15 years prior, based on symptoms. Possibly longer. What is to be dome about it though? It's just irritating.

When the doctor I began using in the same practice I've been with for many years, actually commented on my high platelet count, the usual one I saw commented to me how good it was she spotted it. at that time I wondered if it had been there but not noted.

In fact, now you mention it, I will request a search to see exactly what was there to be seen in previous blood tests. We could all do that.......

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