Thyroid Madness

Hi I'm new here and desperate for advice please. I was put on Levo 16 years ago and despite having 2 kids and 'being carefully monitored during pregnancy' thus meaning they only ever checked my TSH level. I became very ill after my youngest 2 years ago. Since been dx with Hashimotos, Adrenal Fatigue and now mild TED. Due to sky high cortisol levels I'm pooling and suspect RT3. I'm worried sick the effect this is having on my body. I'm not sure what I should be doing and if I can even add T3 since my FT3 is off the chart. Also low PTH levels yet high calcium- I realise I'm somewhat complicated but any advice is greatly received


23 Replies

  • Miki80,

    Can you post your recent thyroid, parathyroid and calcium results and ranges to help members advise?

    If FT3 is over range you should not add T3 without reducing Levothyroxine dose.


    I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

  • I don't have them yet will need to obtain them somehow- most unfortunately were picked up through the useless Endo and I can never get hold of his even more useless secretary.

    Sorry forgot to mention I ditched the Levo a year ago for NDT but only 1 grain a day as I have trouble raising due to all my health issues

  • Miki80,

    If you've already requested your endo sends your results and s/he hasn't, contact the hospital's PALS (Patient Advisory Liaison Service) and ask them to email or mail your results and ranges.

  • I can't get hold of her Clutter, it just rings continuously or I leave messages she doesn't return 😒

    Thankfully new GP is referring me elsewhere but I'm worried how long this will take and feel like a ticking time bomb ATM my health is declining at a rapid rate

  • Miki80,

    Write to your endo and request the results and ranges.

  • Will do thankyou

  • Mention that you are making a "Subject Access Request". Also mention the Data Protection Act 1998 under which you are entitled to copies of your medical records. Specify what information you want, and specify the time period you are interested in. If you want everything, then specifically mention that.

  • Think I shall need to contact PALS as the secretary hasn't replied in over a week!

  • If you write to them mentioning the things I suggested they are legally obliged to reply, they can't just ignore you.

  • Will do thankyou!

  • If you have TED you should have expert care so that you do not develop sight problems. NDT might aggravate autoimmune issues. You can get flare ups during autoimmune which may release T3. You should be under the care of an endocrinologist.

  • Hi I have been getting visual disturbances over a year now it was only picked up at Moorfields yesterday and it's mild so ATM I'm having check ups.

    I'm also under an Endo who is useless so Dr referring me elsewhere. I can't go back on Levo it made me feel I was dying a slow painful death

  • When you have blood tests for thyroid hormones it should be the very earliest possible and a fasting one although you can drink water. This allows the TSH to be at its highest.

    Allow 24 hours also between the last dose of levo and the test and take it afterwards.

  • Shaws thankyou although I don't think TSH has ever been the issue it's the high FT3 and I take NDT, always after bloods drawn

  • The reason your FT3 is higher might be due to NDT. The reason being that it contains T3 and the blood tests were introduced along with levo only which is T4 alone, so I don't think the blood tests correlate when we take NDT or add T3. This is an excerpt which may put your mind at rest. This doctor only took a blood test on the initial consultation and thereafter only concentrated on how the patient's metabolism reacted. Extract:

    September 7, 2000

    Question: Several alternative doctors on the Internet are now saying that the free T3 is the ultimate thyroid test to use in adjusting our dose of thyroid hormone. Do we finally have a blood test that matters?

    Read the rest of this question dated above on the following link. Dr Lowe was also a scientist and researcher.

  • Thanks Shaw I'll give it a read

  • Get your GP to check vitamin D, B12, folate & ferritin. Very common to be low with Hashimoto's

    Also are you strictly gluten free? Can really really help reduce symptoms

    Parathyroid issues - see

    Also very good app from same people - cost £2-3 to download. Put your own blood test data in, gives diagnosis - helps to determine if PTH issues are due to low vitamin D (gluten intolerance can really lower vitamin D)

    Vitamin and minerals levels are very important, but standard NHS thinking, doesn't at the moment seem to recognise this.

    You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, leaky gut and gluten connection to autoimmune Hashimoto's (& Grave's) too.

  • Thanks SlowDragon I'm mostly gluten free and found it helps a little, B12 and ferritin I believe are high have B12 jabs but take no ferritin supp. Have a lot of symptoms that match leaky gut as well but as you say the NHS are pretty useless with all this stuff.

    I just have so many symptoms/issues I don't know what is causing what 😒

  • If you are having B12 injections, it's recommended we also take vitamin B complex "to keep the B's together "

    Sorry you need to be absolutely strictly gluten free. Every time we eat even tiny bit of gluten it can take days/weeks to reduce the reaction.

    Kefir (sort of fermented yoghurt) is good pro-biotic. Can find it in chiller cabinet at health shop. I find it good to have everyday on my gluten free museli. (Home made with G Free oats)

  • Thanks I'll look into it not sure the symptoms I'm having are gluten related though, it feels like I have a neurological disorder

  • Yes I never had any obvious gut issues at all. Just high cortisol/adrenal fatigue/pooling T4 all of which was suppressed/controlled with also taking propranolol for over 17 years! Propranolol (a beta-blocker) also reduces conversion of T4 to T3 and lowers parathyroid hormone levels upsetting bone regulation and also lowers magnesium. Very low vitamin D picked up on BH test (never once tested by medics in 23 years) I was in fact severely hypo but with "normal" TSH. A common story on here. (See my profile for more)

    I was astonished at my improvement off gluten, but I know we are all different. Some also react to nightshade group (tomatoes, potatoes, peppers). Others find sugar or dairy an issue.

  • I suspect leaky gut upon further reading, was dx 18 yrs ago and given some Buscopan! But I flit every day between chronic diarrhoea and constipation no matter what I eat.

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