Pulmonary Embolism

[Eloisesupergirl]

Dear All,

what started as a possible DVT but remained untraced soon turned into the most excruciating pain that I have ever experienced: after having been carted off to hospital as an emergency and numerous painful enquiries, it appears that I have multiple clots on my lungs - Pulmonary Embolism. I am now on blood thinners for the next three months. NHS staff were excellent: I wish I could say the same for the NHS bureaucrats - why? Even though I live a very healthy lifestyle, even though I do not drink in excess (one glass of wine a day), do not smoke, walk miles, do not eat processed food - as you'll know, we thyroidies have to watch our diets - even though it is NOT genetic, inherited and etc. they know that it is very likely down to Hormone Replacement Therapy - i.e. Thyroid hormones.

My thyroid reading was below par when they took blood tests: but this is like down to the situation I was in. My iron could be better. But then the rub. They asked me about my medication. I said I am severely Hypo-Thyroid. 'Ah' they said 'Then you are on Thyroxine!' 'No' I said 'Filthy stuff - I'm on NDT' No none knew what it was, what the acronym stood for until I explained. 'My gland can no longer convert T4 into T3' I said 'thus I am on a form of NDT' I showed them the bottle of capsules that I had only started taking at the commencement of the year and there was an embarrassed silence.

I have now been commanded by my splendid GP to go and see her early next week, whereupon further explanations will ensue. But, I ill say this. The doctoral staff were fully on my side and were horrified by the appalling low standard of thyroid care I have received in this country over the past 30 years.

My warning: be on the loop out for DVT or Pulmonary Embolism - it is apparently, far more common than we realise - and our thyroid care could possibly be a factor.

Be on the look out - I am lucky to be alive - and I can tell you, the pain is not pleasant.

Best wishes to all of you

[Star13]

I can relate as I’ve been there! I do hope your improving now. The point I wanted to make to you however is, did they test you for any reason as to why you had clotted? Or did they just assume and blame HRT?I had a similar experience, I have Hashi but they didn’t do any clotting testing and a few years later I had another clotting incident only much more serious.

Antiphospholipid Syndrome or (APS) commonly runs alongside Thyroid autoimmune disease and Sjogrens another disease often mistaken for Fibro. I would strongly advise you to ask your GP to do the three blood tests to check if you have it because you will need to a) be on a different blood thinner than I’m sure they have put you on and b) not come off it after 3 months but stay on it for life. I say this not to scare you but to make sure they check so that if you do have it it doesn’t get missed. It’s very rare to have a unprovoked VTE as you had so unless they can find the real reason you should continue to keep looking. If you need information on the three blood tests then please ask. Look after yourself.

[Eloisesupergirl in reply to Star13]

Thank you so much for your good wishes and for your suggestion: I will work on it. They are indeed trying to work out why art happened and I am in for more CT scans next week. I have multiple clots and they are scarily in the lungs and close to the heart. I will ask then the relevant ant questions next week and thank you once again.

[shaws Administrator]

Congratulations for widening the hospital staff's knowledge that there are other 'replacement hormones' than levothyroxine (which is T4 alone). Would the staff - if diagnosed as hypothyroid - prefer to take a prescription for levothyroxine (and thousands seem to have no problem with it (T4 alone). OR a replacement hormone and prescribed from 1892 (now withdrawn by the NHS) that contains all of the hormones a healthy thyroid gland would have?

[Eloisesupergirl in reply to shaws]

I wondered that myself!

[Hidden]

I'm sorry you had a PE, I also had one back in November, I had ignored the pain in my leg putting it down to my RA but ended up in hospital as I had chest pain & was very breathless. The CT scan showed that I had a very large saddle PE - saddle means that it was on both lobes, so like you am now on anticoagulants, but for life as I've had 2 DVT's previously. I wanted to be tested to check if I carry the gene which causes blood clots but my GP is reluctant to do so. I'm waiting for a follow up with respiratory but they are all working on the wards at present, however when I do see them I will be asking to be tested. I'm still breathless but not as much as when I was admitted.

[Eloisesupergirl in reply to Hidden]

The breathlessness is a bu**er but it was the pain that I was taken aback by! Thank you for your best wishes - mine go to you. Keep well.

[Hidden]

They initially thought I was having a heart attack but my pain wasn't too bad, it was the breathlessness that got me. I imagined it was a bit like people have been getting with a severe case of covid - that was scary thinking of it.