Hi I had full thyroid removal in 2014 due to graves. I wondered if any of you could tell me as I no longer have a thyroid will I still have graves? I cannot regulate my temperature, dry skin, weight goes up and down all the time, aches in my body all the symptoms really. Levels are all within normal range I'm on ndt as thyroxine made me feel so poorly. But I'm putting in a claim for pip as I've recently been diagnosed with 2 different heart conditions my health overall is pretty rubbish, so I wanted to know do I put graves or without thyroid?
Thanks in advancr
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cneal09
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Hi thank you, just didn't get my vitamin levels checked as fell ill with my heart and the past year has been a blur, but thank you I will be booking appt with Dr to get checked again , your post has just reminded me x
I'm on ndt now I have been for a while now thankfully I feel better on it than thyroxine. I have an inherited heart condition hypertrophic cardiomyopathy along with tachycardia. I'm on no supplements currently as not sure what will interference with my heart x
Graves is can go into remission / relapse after diagnosis & you might have Graves antibodies right now ie “active Graves” but as you have no thyroid (the target of the the condition) you can not be hyper. You are now hypothyroid.
I would be specific on form & say Graves diagnosed (year date) thyroidectomy 2014 to prevent hyperthyroidism. Currently hypothyroidism & treatment.
Remember the PIP award is not based on the name of the condition you have - it’s the help you need which is taken into account.
You do need the support of your GP / specialist or medical professional who can confirm your your difficulties.
Claims can take a long time to process around 6 months & you often need to attend a meeting for formal assessment. (Sometimes done via telephone)
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While you look into claiming might be worth checking your thyroid is optimally treated.
What are your latest thyroid results? Eg TSH, FT4, FT3, have you had antibodies re-tested (TPO & TG - TSI & TRab) & nutrients such as folate ferritin vitamin D & B12. (and always include the lab ranges as they vary between labs)
In range or “normal” results is acceptable to doctors.
What other medications or supplements do you take?
Thanks I've an inherited heart condition hypertrophic cardiomyopathy and tachycardia. I'm on ndt for thyroid and bisoprolol for my heart but I have appt in October to discuss with my consultant next steps for my heart as my cousin had sudden death so I'm at higher risk and symptoms are awful. I last had thyroid checked about 6 months ago all was withing ranges apart from tsh but that's because of the ndt I'll check again x
Graves is for life, it's an auto immune disease - but poorly understood and badly treated.
I think had you been treated after your thyroidectomy with both T3 and T4 thyroid hormones and not left to fend for yourself and eventually buying NDT and self medicating the result would not be as disabling as it is.
Looking back I can see an obviously conversion issue when on T4 monotherapy :
I too have Graves Disease but had RAI thyroid ablation back in 2005 -
I too had a conversion issue with a low T3 and a high T4 and refused both T3 and NDT on the NHS and started self medicating around 5 years ago with Thyroid S and am much improved.
I did reply to you - but do not think you saw my question on your taking NDT and only just seen you posted results 10 months ago - - anyway - you do need optimal ferritin, folate, B12 and vitamin D for any thyroid hormone replacement to work well :
I also take adrenal glandular as the adrenals support the thyroid - so this might be something to think about :
On NDT you will likely not have blood tests that fit into the ranges that were designed by Big Pharma to be used with their synthetic T3 and T4 options.
On NDT after around 10/12 hours from your main dose your TSH will likely be low - and that's ok - but your T4 may well be proportionately lower than when on T4 monotherapy BUT your T3 proportionately higher than when on T4 monotherapy and you dose to the relief of symptoms.
I started adrenal support while waiting for the NHS endocrinologist appointment with a view to ask for T3 or NDT as I had become very unwell on T4 monotherapy.
At the time I was very shaky and couldn't stand or walk for very long with a very achey lower back and just anxious within myself :
After around a month I felt a bit stronger in myself and after 3 months much improved and the achey achey back gone - and though I failed to get any help through the NHS I do think adrenal support has been of benefit and I still take them.
Also I read that RAI is taken up, to a lesser extent, by other glands and organs within the body which includes the adrenals so ' see ' this support system as a given.
Just out of interest when you attend hospital appointments for your heart is there any conversation about your thyroid results and why you are self medicating ?
Does anyone feel or think you should be ' picked up ' and treated properly by the NHS and offered a prescription for Armour or Efra - the 2 main brands of NDT - available on the NHS ?
The way the NHS is operating these days, I'm afraid YOU have to be the one to mention it and ask the question "might this have an effect on my situation?" In your shoes I would raise it at every appointment.
Seems like we have many of the same problems. I have had tachycardia as long as I can remember. It seems to occur when my stress levels go up or I have too much caffeine. My thyroid was removed about 30 years ago through RAI after I was diagnosed with Graves. My mother had no functioning thyroid after the age of eight. My daughter had graves when she was 12.
After fits and starts I finally was regulated at 150 mcg of thyroxine. Then, about eight years ago I started taking my meds correctly (had been taking the pill along with breakfast). My TSH said I was hyper and the doc kept lowering my thyroxin until I started feeling hypo (TSH still said hyper). That’s when an endocrinologist was called in and he prescribed liothyronine. I am now on 100 mcg levo in the morning and 5 lio morning and bedtime. My TSH remains <.02. All my bloodwork has been in the healthy range but “they” have said I am endangering my heart. I am deathly afraid of being like my mother who, because she was told she was hyper (no way..she was way hypo). I feel that at my age quality of life outweighs quantity and would like to enjoy life.
I find it very interesting in the fact that folks on this site know way more about the ins and outs of thyroid disease yet can’t get the meds they need as easily as we Yanks do. On the other hand the docs here dwell on the TSH as the “gold standard and won’t part with it. I will be 80 in January and am constantly going from hypo to hyper (my doctor remarked that my threshold between the two is very narrow). Where do we go from here?
Hi There, sorry to hear you are having issues with your thyroid medication and still feeling unwell also having heart problems. It’s not easy.
I had my thyroid irritated about 15 years ago. Was diagnosed with Graves. Didn’t know much about it and just went along with the Drs. Was put on Levothyroxine and basically left to get on with it having blood tests every 6 months or so. Felt ok but not 100 % went back to Dr and was told my TSH was in range and all was fine. I started to research things about my thyroid condition and supplemented with Vit D B12, magnesium, zinc which my now Endocrinologist agrees with.
The first endocrinologist I saw was useless. I asked to be put on T3. He agreed with a 3 month trial but set me up to fail as he put me on too high a dose. He said I told you it wouldn’t work but didn’t offer to drop the dose just said I can’t help you anymore.
That’s when I went for a second opinion and my now endocrinologist is brilliant and have felt better ever since.
It’s a shame that you have had to self medicate. The NHS should be helping you but I’m afraid to say it’s all down to money. Some doctors are good some aren’t. I have been lucky in the fact my Gp hasn’t said she won’t prescribe T3 and have been on it for 3 years with no issues.
I hope you feel better soon and get the help you need.
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