On levo for 70 years after rai now had stroke need advice off anyone with experience of stroke in same situation

[daval]

Need advice,help anything

[MaisieGray]

While you wait for someone to respond, it would be helpful for you to clarify exactly what it is that you need advice about. Also, if you post details of your most recent blood tests together with their ranges, that will inform members offering advice to you.

[daval]

Cant post anything as stroke has limited my abilities can only just do this typing with difficulty just woul like to hear of someon eldes experiences if anyone had same and had good outcome

[MaisieGray]

I'm sorry to read about your difficulties post-stroke - have you investigated speech to text software, which might help you, or been given therapy or advice on aids to help with physical limitations?

Whether we respond well or less well to a traumatic event, depends on many variables and therefore, is very individual; especially how well or otherwise, any existing health conditions are treated. As the thyroid impacts so many aspects of our body, it is important that with a thyroid disorder, we are optimally medicated; and not everyone necessarily is, due to the inadequate management of the disease provided by some Drs. Hence asking for your thyroid blood test results to check how well your thyroid disorder is being managed - if it isn't, we can feel unwell and symptomatic, but importantly, being under-medicated impacts directly on our whole functioning including our healing, and more importantly, on our heart and brain functions. So a key underpinning of recovery is to not just have thyroid hormone levels within range, but at levels which are optimal for you - and not every Dr will get that, and prescribe at doses which do not support being optimally well and euthyroid - which with no thyroid is especially important.

[Jodiedebs55]

Hi daval

Im sorry to hear of your stroke , I too suffered a stroke in 2016 and it was directly linked to my New GP losing my medical history and refusing to prescribe my levothyroxine which was 125mcg a day , I went for 6 months and was desperately ill and they still refused to prescribe it when I was rushed to hospital the consultant said it was caused due to rapid loss of my thyroid meds and prescribed me 100mcg before discharging me and a stern letter to the GP basically accusing him of causing it , I stopped talking levo only 8 months ago and now self medicate with NDT and its changed my life completely, I still have limited use of my right hand and have only recently been allowed to drive again , I hope you feel well soon i know my reply isnt of any help but its just to let you know i understand how your feeling ,

[pennyannie]

Hello Daval

I'm 71 post RAI in 2005 and am with Graves disease, TED and hypothyroidism.

I have not had a stroke but have been seriously unwell these past 4 - 5 years and have

found no help or understanding within the NHS.

I believe my health issues were due to long term consequences of radioactive iodine and

my thyroid condition being monitored by only a TSH blood test and monotherapy with Levothyroxine.

I am now self medicating with NDT and am feeling so much better than I ever did on Levothyroxine.

It's not a decision I took lightly, but felt I had no option -

I understand your situation isn't as straight forward - take good care -

[daval in reply to pennyannie]

Thankyousomuch for your email hs made me feel much,ore hopefyl, I to had my levo drastically reduced about 2 years ago long story but I’m seeing an endo in middle of January who said before stroke that I had all the classical symptoms of hypothyroidism on a dose of 125mcg a day will be interesting to see him now, hopiim making sense difficult to writ, thank you so much for your reply

[pennyannie in reply to daval]

Hello again,

No problems, it's good to share, another way to learn and understand our situations.

I did read your previous posts and believe that you have tried NDT before and had also asked about the addition of T3, so presume you ' gave this a whirl ' at some point in time.

Yes, being managed on TSH reads is not appropriate especially since Graves patients have TSI antibodies controlling the TSH giving a false suppressed read when on a relatively low dose of levothyroxine.

When you consider a fully functioning thyroid produces approximately 100 T4 + 10 T3

a day, it would seem logical that our starting dosage of hormone replacement be that.

After ablation I was put on 100 T4 - obviously no T3 - so from day 1 am not optimum.

This dose was adjusted over the years up to 125 where I felt a bit better, but then it got

reduced back down to 100 T4. as my TSH would show up as suppressed on 125.

Drinking radioactive iodine is not safe - no matter what the NHS says - I'm living proof of that - but what's done is done and we have to manage, as best as we can with the consequences.

I am supplementing my adrenals, taking vitamins and minerals as detailed on this website and currently finding my way with Thyroid S - NDT from Thailand. The transition was surprisingly smooth and I am now on 2 grains - but felt marvelous from the first dose. I believe this must be down to the T3 component in the NDT - my brain is back, and now my feelings of being ' beaten up and walking around with flu ' are all but a memory, most days ? Yes, maybe I need to up a bit - still thinking that one out.

Anyway, it will be interesting to see what the endo has to say.

I have seen 2 endos - the first one was private and he suggested I ' go on the web '

read up and self medicate - that cost me 185 pounds.

The second one was at the NHS hospital where the first one was the Head of the Endocrinology Department - I was refused a trial of T3 as my TSH was suppressed.

I have been offered no help and my letters to both my doctor and endo from April this year, remain unanswered despite my follow up phone calls.

It is outrageous.

I hope your appointment goes well. I think you need to be prepared, nothing is a done deal. It might be useful to read up and take Professor Toft' s article from last year. He writes that he is not referring any of his patients forward for RAI anymore because of the apparent lack of due care and understanding in primary care.

Well that's interesting, it's what we thought, so now we know, we were right, all along.

The article can be found in here somewhere, sorry I don't know how to resurrect it.

Thyroid hormone replacement - a counterblast to guidelines. AD Toft

Journal of the Royal College of Physicians of Edinburgh December 2017.

Sending a hug -

[MissGrace]

Hi Daval. I’m so sorry to hear about your stroke. I can’t advise medically, though I have friends who have had strokes and over time have made a good recovery - the brain is a marvellous thing and in time with rest, it does rewire itself. Remember also, your stroke may not be down to your thyroid, there are so many causes. I really wanted to send you lots of love and hugs and all my best wishes and positive thoughts. This community is always here when you want support. They are a fantastic group of people. xxx