from hypothyroid to pre-leukemia

hi all , my name is Alison ,and I have been a member here for a while ,learning from you all about my hypothyroidism .

This is NOT to frighten anyone , but to sound a warning note when we think that everyting is down to being Hypo.

I was diagnosed hypothyroid in may 2012 , following an ultrasound scan on a lump at the side of my neck . a goiter with nodules was found and blood tests were done . the lump was ok . reason for checking that was lobular breast cancer in 2005 and 2010 .

tsh was 32.5 range .4-4.5

t4 was 8 range cant remember .

dignosis at ENT dept Stafford hospital

started on 25mcg levo then 50mgs 8 weeks later .

GP as much use as chocolate teapot of course . Felt okish but still loads of symptoms and decided to try Armour . gradually increased dose to 2 grains over time . had some great days and weeks last summer .

In Oct Nov started to have to sit down in middle of zumba class , got breathless walking in to work . Xmas , made a right hash of dinner and couldnt co-ordinate family and activities .

Gone downhill from there really . Assumed as we all do that it was hypo t , and tried changing doses , heart rate started to increase as well . Reduced dosage but made no difference . All this taking time over jan/feb . I have been under chronic stress since 2005 with redundancy of my husband , stressfull work ,trying to move house , mother in law moving in and plans to change new bungalow so my Mum can move in .

Anyway March April has been a nightmare as my health decreased so much that in the end I was in bed most of the day . High heart rate , worst at night ,pounding /tinnitus in head .

I can only get to see a duty doc at GPs or give 3 weeks notice of being ill .

Long story shortish , at worst frightening stage , saw duty doc who took bloods for full blood count .

Ended up in Hospital Heamotology . I have Pre-leukemia . It may have been masked by the hypo symptoms and I did"t realise that my frequent colds needing antibiotics this year were significant . ben here now in isolation ward since 11th April . I have had 2 bone marrow tests [1st didnt work ] heart , kidney , liver and bone scans . Enough platelets and transfussions to fill a small person .

Now Im sitting here feeling okish again but I have to stay here for the next month at least for the most aggressive type of chemo devised . Then do it all over again in a few weeks . Will only be able to go home if I am well enough and low enough risks of getting infections .

worst case senario , I could be here for 4 months .

Apparently this is likely caused by Radiotherapy in 2005 which was the standard treatment then [they dont do that now].

PLEASE PLEASE PLEASE . If you are not getting well and the Doctor says "its not youre thyroid . Make them check absolutely everything else .

All my actual symptoms were caused by anaemia , which can be linked to hypo .

BUT DONT MAKE ASSUMPTIONS AS I DID >

Wishing you all recovery , and a good life

Alison

15 Replies

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  • Alison,

    Thank you so much for alerting us all. How brave you are to share your story with us.

    It is a salutary reminder for us and our health care providers that every avenue must be checked, and that we must continue to think outside the box at all times.

    I do hope that you are receiving the care and treatment that you need and wish you all the very best with your recovery.

    Jane x x

  • Thanks for your good wishes

    Alison x

  • Bless your heart. You certainly are suffering. I hope things start to look up quickly and you get on the road to recovery.

    Every one of my siblings have a immune problem, one sister itch leukeamia & lymphodeama.

    Take care. Xx

  • Poor you :(

    Unfortunately, any treatment for anything seems to get worse and worse- I know there are good doctors out there but frequently hear stories of misdiagnososis of all sorts of things. I think its wise to say, if you don't feel right ( whether thyroid or otherwise) go on and on at them until they check EVERYTHING. Hope you get better soon.

  • thank you cal

  • What a shock that must have been :(

    Thank you for telling us your story. It is so easy to blame one thing for all our symptoms; and the doctors do it too or tell us we are hypochondriacs. This is a very important warning to us all, and I hope some doctors learn from this too.

    I wish you all the very best and hope you make a full recovery. Please let us know how you get on.

    (((Hugs)))

    Carolyn x

  • thanks Carolyn . If it helps one person i'll be happy .

    will keep you all posted

    love Alison x

  • Hi Alison - thanks for sharing your story with us. I really hope that you feel better soon and don't have to stay there for 4 months. I hope they are looking after you very well. Clare xx

  • Hi Alison

    Thank you for sharing your story, especially when you are still in hospital and under treatment.

    I just wanted to send you good wishes for a speedy recovery, I hope they are taking good care of you and you get out of hospital to health, happiness and sunshine soon.

    Lizanne x

  • Hi Alison think i,ll take my laptop to the docters and endo next time i go so they can read this then perhaps they will listen. I hope all goes well with you please let us know how you are getting on if you feel up to it. Best Wishes and good luck xxx

  • Thank you for drawing attention to the fact that not all problems are thyroid related!!!

    Very important to do a thorough check

    Hope your recovery goes well. Take care and continue to look after yourself

  • Oh Alison,

    What a rotten journey you are traveling?

    Keep your pecker up!

  • Thats awful! I certainly hope your health and the other practical problems plaguing you and your family have a happy ending.

    I was a bit worried reading your symptoms because I had the same symptoms - breathless, pounding resting heart rate, tired, insomnia, poor concentration and a host of other things then after 2 years went to my GP and was referred immediately to an Endocrinologist who took blood etc and told me I have Graves Disease. I was prescribed 3 tabs Carbimozle (probably spelt wrong) twice a day and half a beta blocker twice a day. I have to admit I am not that reliable at taking meds and missed days here and there but after 3 months I got the hang of it and felt really really good. Still had itchy dry eyes and hair loss but the most alarming thing which was pounding heart weight loss, insomnia and muscle weakness stopped.

    On my next visit to the Endo he said my whatever levels were about normal and I could take 3 tabs once a day and stop the beta blockers. I reduced the dosage and unfortunately still missed days here and there and After a couple of weeks I suddenly felt anxious and weepy and couldn't take even little decisions and didn't want to leave the house. Anyway, I stopped taking all meds and now feel better. I have no idea what my blood levels are doing but the heart thing has not returned and I really do feel better. I have put on 10kg's in 10 months and I am not happy about that but everyone says I look good. I will go do the blood thingy again to see what is going on and no doubt get a big lecture from the Doc if things are not right.

    Apart from my story, I just want to comment that the common thread through everything I have read is how bad the medical service in the UK seems to be ... I cannot believe how casually everyone says the doctors don't care, won't listen or, you have to badger them to get tests done then get results. It's awful! It is not like this in New Zealand ... that would never happen ... I feel ashamed that I don't take my meds and to be honest I have broken more than a few appointments because I can't be bothered going and now I find out there are so many of you having to beg to get proper attention. I think I should be more grateful.

  • I'm sorry, but I have to disagree. It is the same here in NZ. GPs are not authourised to do any thyroid tests beyond the TSH, so if you have central or secondary hypothyroidism, it will not be picked up. And if you have low ferritin levels (iron storage), you will be prescribed iron tablets and it'll be just assumed you eat a crap diet, without any investigation into why you're anaemic in the first place. And again, if you have elevated liver enzymes, again they'll assume you have non-/alcoholic fatty liver resulting from a poor diet, also without any investigation as to the underlying cause (which consequently also results in weight gain and an inability to lose weight, despite a healthy diet and regular exercise).

    I only say this as a fellow Kiwi, who lived in the UK for 10 years, that the problems with the medical service are the same, albeit with a smaller population, our doctors have to be a little more polite/diplomatic in their patient/bedside manner.

    And lethargy/ fatigue/ low energy levels (or motivation), are synonymous with untreated or insufficiently treated thyroid issues...

  • Hugs to you sent by the world full. Horrible state to find yourself in but as you say, things can be mistaken or masked by another and this is what happens.

    Stories like this that should be hilighted as a clear warning to not only us sufferers but to warn Dr's in general that just because a test comes back in anice ticked box. It does not necessarily mean the patient is equally normal.

    Huge hugs to you and fingers crossed you get back to a healtheir self soon. x

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