Starting treatment : Hi, going through a rough... - MPN Voice

MPN Voice
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Starting treatment


Hi, going through a rough patch. After 2 years of stressful events I have been suffering badly with anxiety to the point of feeling ill . Also hypothyroid my blood results are all over the place , gp called them bizarre with tsh raised but t4 also high. To top it all yesterday at haemotology my platelets have also risen after always being stable in 800s to 1033. I was told I needed to go on treatment and my anxiety has now spiralled. I have to go back in 6 weeks to give me some time to feel a bit better as I think it was obvious I wasn't in a good place yesterday to make decisions. After a sleepless night I feel even worse and am struggling. In the past antidepressants have not been the answer for me as I seem to get every side effect going . I have been having talking therapy which gp recommended. I feel very afraid of starting treatment which I know isn't unusual but on top of everything else I don't think I can cope. I also wonder if the increase could be related to my other problems.

23 Replies

Hi, sorry to hear you're going through a rough patch. I wondered if you might want to try something different to try and clear some of the anxiety? If you have a look at it will explain about Emotional Freedom Technique and how to do it, it's very effective and keeps you firmly in charge of where you go with it. Might be worth a look if you'd prefer a self-help therapy. Hope you feel better soon.

jodary in reply to Hidden

Thsnk you for that , i will have a look x

Anag in reply to jodary

Yes! Tapping is amazing! Anti depressants don’t work for 90% of patients. Your thyroid is most probably at fault for a lot of you emotional upset. Welcome to the club!! I also have Hashimoto. I thought I was bi-polar! It was thyroid dysfunction. Nevertheless, Most anxiety and depression apparently comes from disbiosis and I really believe this. Check that out. Since fixing my gut through diet and supplements, I haven’t had a single depressed day in 1.5 years. My daughter too. Also, I’m on Anagrelid. I am anything but a fan of chemical medicines, but I do take what I must. At the same time, I banned absolutely every other chemical out of our home and food. All that together was worse than taking Anagrelid and aspirin. My thyroid med is also bioidentical swine hormone. Works really well. Took 2.5 months to complete the switch over. Blood work is very good. Please get the heavy metal in your body checked. They also cause thyroid, emotional and gut upset. Hair testing works best. Chelation testing can be very taxing for people like us. Having complications to your illness (like me): thyroid and emotional problems, it’s important to find a very good holistic doctor or functional doctor. Educate yourself. It is worth the investment. Wishing you lots of success in dealing with all this. You can get out of this, one step at a time, Jodary. : )

In my case my platelets went up 150 on my appointment this month. Last appointment they had been a normal range. I’m sure it was because I had more stress to deal with soon after the previous Consultant appointment. I’m still continuing the 1000 mg Hydroxy. I’m dealing with my stress in a better way now. I’m calming down, taking time for myself to relax more. I’m also just relaxing more. I’ve put a hold on my stress by trying not to let the reason of my stress to pull me down as it had really made me a mental wreck. I do 3 important things a day ie. House work. I’m not stressing over bills. I’m not babysitting for my grandchild as this was tiring me out as I was always available. My daughter is weeding my garden. I will put new soil in my lovely garden next week. Then plant some Wildflowers. I’m being more positive and doing things like I to make myself challenge how much is important to me. Because I have et. I’m already feeling more calm. Just putting myself number one at last. I usually help everyone else and am always there for them. But decided I’m important now. It’s a good feeling. Then I’m going to my sister for two weeks she lives by the sea. This will show everyone else I’m not just there for everyone’s else’s needs and problems. I’m hoping my stress levels will ease. This is my answer as it’s my disease and I’m going to make the best of my life!!! My daughters living here she can water my garden while I’m away.

jodary in reply to Helena303

Thank you, you sound very similar to me

Last year my daughters husband went off with someone else leaving her pregnant and with a 2 and 5 year old. About the same time we had a bereavement whilst I was still grieving for my mum. Unfortunately she has noone else to help and whilst I feel like I need to put myself first I just can't. Why does everything happen at once?. After 7 years of aspirin only I'm now faced with starting treatment as well. It all seems like a nightmare xx

Kelly2 in reply to Helena303

Nice attitude! Couldn't agree more!

Sorry that you are going through a rough patch. I certainly find that living with this long term illness has its own way of wearing one down, simply because it goes on and on. I couldn't help but notice you mention being "hypothyroid" and that your TSH was raised, I'm not a doctor, but I do have friends with thyroid troubles and it certainly did affect their mood very much when their levels were out of whack. I wondered if there was any possibility that this might be making things even harder for you at the moment?

Anyway, I just wanted to send you my sympathy and very best wishes and hope that things improve for you soon.


jodary in reply to stillkicking

Thank you so much. Unfortunately all I get from my gp is that my levels fluctuate a lot so she won't change anything. My main anxiety now is from starting treatment and getting side effects which on top of everything else I won't be able to cope with. Anxiety is a horrible condition on its own ! feel very isolated and am so grateful for everyones support on here x

I agree about anxiety being horrible. It can be quite subtle too in that it can make us withdraw from taking part in things and so fill our heads that we can no longer "smell the roses" and enjoy even simple things. I do find I have to fight back at the fear and anxiety, and try to gain a little victory every so often to keep on top of things.

One day to day therapeutic thing that I do is simply a little walk with my cat! Sounds ridiculous I know, but he loves it and practically drags me out of bed some mornings just so we can walk slowly along the little path we have under trees I planted many years ago. Seeing things with the help of his eyes and enthusiasm gives me a lovely little break from my own worries. I even have been known to sit with him on the slightly damp leaves on the path to peer at things from his level... We are heading into Autumn here in the South of New Zealand so autumn leaves are starting to appear on the path now, and funny little toadstools and fungi. Without my cat's help I probably wouldn't take the time to notice such things.

Regarding treatment, is that Hydroxyurea? (I've been on that for just over a year now).

Best Wishes,

Peter xx

jodary in reply to stillkicking

Yes it is Hydroxyurea. I appear to be sensitive to medications anyway so am already convinced I will get all the side effects. Thats also the anxiety giving me negative thoughts. The walks you take sound lovely, here in UK we are just heading into Spring so much to look forward to but you are right, its so easy to just not feel like making the effort.

Thank you

Helena303 in reply to jodary

I understand how you feel. I’m on 1000mg a day. Before this medication I had daily headaches for over 5 years also low iron. My Consultant said I may have had ET from November 2013. So I decided to take these chemo capsules. In January my iron was normal and my platelets normal range.

Last weeks appointment my iron was still fine but those platelets up to over 500. Sure it was stress and mini breakdowns.

Next time my family say how well I look how flawless my face is and how young I still look. They will not know the truth how drained and fatigued I get. I’m over 60 I may look like I don’t have a care in the world. But I’ve a rare chronic blood disorder. Some days i am drained and fatigued. Other days I feel young. I play my Tamla Motown music and feel alive. But life is for living so I stay positive.

Cja1956 in reply to Helena303

Helena, I feel the same way. When I talk about my illness and people say I look good, I feel they don't understand at all what I'm going through. I take 1000 mg of Hydroxy/day and my dr just increased my Jakafi dosage to 20mg a day from 10 because my platelets kept increasing. I go back in 2 weeks to see if they have improved. I agree, we have to stay positive and this forum helps.

Deefen in reply to stillkicking

As a fellow cat lover - I get you Peter! Sometimes just being with your cat on their basic approach to life is the best!

Bless you, yes I too have wondered whether anxiety is a crucial factor in a rise in platelets.

If any small help. I have been taking Hydroxycarbamide for about a year. Doctors are fantastic and answer any questions.

However you maybe need some time to absorb all that you are bravely coping with, and not to rush yourself to go onto medication.please feel welcome to chat anytime. Anxiety is very troublesome, but feel you are not alone and I have found many people share this extremely difficult but very human response to life.

jodary in reply to Doggy1903

Oh thank you so much for your reply, at my last visit it didn't seem as I was going to get a choice when I go back in 6 weeks. If I try and reduce my anxiety maybe they will go back down. Either way the return visit is going to get my anxiety rising again.

Doggy1903 in reply to jodary

of course, you do need time to make a really good decision re meds. I think feeling good to make your own informed choices is very important. I was taught that anxiety can be very helpful in an odd way, note when your anxiety goes up but not to fight against it. This action seems to reduce it somehow!!

jodary in reply to Doggy1903

Have you had many side effects? What were your counts . I have reached the magic age of 60 , although I have no other risk factors apart from platelets obviously.

Doggy1903 in reply to jodary

No side effects at all. Count was just over the 400 mark which has come down from around 790.

Sorry to hear of your troubles. I also went through a rough patch these last few months. I started seeing a therapist once a week and forced myself to step out of my comfort zone and tried yoga for the first time. I’ve been on hydroxyurea for the last 11 years for ET But when my doctor told me that I had progressed to polycythemia about 2 years ago, it was difficult news to take. I’ve been on Jakafi, as well, for the last few months and I became very depressed. My family was also trying to take care of my brother, who is mentally ill, this past year and the stress was overwhelming. My numbers kept going up. I go back to my doctor in two weeks to see if the medication is helping.

Good luck with the hydroxyurea. You might have side effects at the beginning but usually your body adjusts to it. Let us know.


jodary in reply to Cja1956

Thank you, I have tried a therapist and am going to try hypnotherapy to try and alter my negative attitude. I should realise I am not the only one with additional problems. Its not easy for anyone but at least we can take a tablet and a lot of people are worse off. Its just accepting it I still have a problem with.


Cja1956 in reply to jodary

Yes, we have to keep in mind that people can live many years with this disorder. I agree with Kelly. You need to see a good hematologist to handle your platelets.

Good luck.

Hi sorry you feel this way but you must take matters in your own hands. One at a time. First of all deal with your anxiety with herb teas, valeriana , etc. and also low dose of Lexotanil. At the same time go to a good endocrinologist to fix your tsh, t4 with the appropriate everyday pills. I have mine under control. And last but not least a good haematologist to plan a treatment for your platelets. Everything is simple if you pull yourself together and take care of yourself. No one else will do that for you. Be well.

High T4 can cause anxiety. Get to a good endocrinologist. It could be Hashimoto’s causing your levels to swing low and high both. It could also be caused by other things and GPs are not generally well trained when it comes to the thyroid.

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