Sorry as this may be long but wanted to give you the whole picture as I've become worse and worse over the past few weeks and don't know what to do. I enlisted the help of a private endo by zoom whom I spoke to just after 2 weeks after reducing thyroid Armour to 1 1/2 grains and was told to test 5 hours after taking meds and eating etc.
TSH: 0.01 (0.27-4.2)
T3: 8.4 (5.1-6.8)
T4: 16.00 (12-22)
Told to come off all vitamins as I shouldn't need any of them apart from Vit D, and followed with an Advanced Thyroid Function Test 4 weeks after reducing:
CRP HS: 1.0 (0-5) (Has jumped up from 0.62)
Ferritin: 84 (13-150) (Has jumped up from 40 in iron panel test)
Folate: 7.2
B12 (Active): 242 (25.2-165)
Vit D: 142
Thyroglobulin Antibodies: 13.4 (0-115)
Thyroid Peroxidase: 16.2 (both of these have jumped up a little)
TSH: 0.01
T3: 5.5 (Falsely low result as forgot to split medication day before)
He told me that he thought I had got thyrotoxicosis and also long standing CFS and was quite scathing when he learnt that I had remained well under Dr Skinner for so many years and said that my TSH was non-existent and I must have been over-medicating for years. Was told to reduce immediately again to 1 /14 grains with a view to swapping over to a combination of T3/T4 in a couple of weeks. I tried doing that for 4 days and felt terrible so went back up to 1 1/2 grains and tested again with medichecks after 6 weeks (correct procedure done this time) and haven't spoken to him and not sure if I even want to.
TSH: 0.01
T3: 5.0
T4: 16.00
Meanwhile GP ran a liver and kidney function test because of my stomach pains which showed
Creatinine (XE2q5): 47 (49-90) - Below reference rang
Alkaline Phosphatase (XE2px): 142 (30.00-130) - Above reference range
Followed by a scan as now experiencing chest pain as well and it showed nodules on my lungs so to be scanned again in 3 months to check if cancerous and also having palpitations constantly and especially at night.
My biggest two questions are: I know that the first test taken after 2 weeks will show highly false results but is the T3 at 8.4 deemed to be as bad as he said as this happened a couple of years ago when in doctors surgery at which time I felt well.
Could the elevated ferritin level show that something is amiss with my iron levels afterall and could this perhaps be at the back of the chest and stomach pains?
I'm truly feeling the worst I've ever felt in the whole of my life and the sleep deprivation over the past couple of years isn't exactly helping matters either and I really don't know whether I should reduce again to 1 1/4 grains or even maybe go up to 1 3/4 grains. I've completely lost the plot and even wonder if I should go back onto antidepressants (been off them for 2 years) as I feel continously stressed out by the whole thing. I would be so grateful for any advice from you lovely people on this forum.
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Delgor
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If I just waited 5 hours from taking my NDT and did a blood test - my T3 would be well over range :
My T3 is just about in the range at 10 hours : so for a medical man brainwashed by blood tests, ranges and guidelines, that were written for treatment with synthetic thyroid hormones, I would have to try and wait for around 24 hours though not sure if I would cope or be able drive anywhere by then !!
As for my vitamins and minerals, for optimal thyroid hormone conversion and my continued wellness I aim for a ferritin of around 100, folate at around 20, active B12 at around 75++ and a vitamin D at around 100.
Your ferritin still needs a little help and if supplementing B12 and vitamin D I might rethink these two, and look again at folate is it is a little low :
I have been on 1 + 1/2 grains for over 3 years and for the most part much improved.
I take all my dose at around 3 am when nature wakes me up for that toilet break.
Thanks so much Pennyannie - really grateful to hear your advice. There's no doubt I am suffering anxiety made worse by going from one hospital endo to a private endo who at the end of the day still seems to be going by blood tests and not how I feel. I really appreciate knowing what you take and when.
I have never split my doses of thyroid hormones. I take my dose on an empty stomach when I awake with one glass of water and wait an hour before I eat.
I follow the method of Dr John Lowe (now deceased) and he was an expert in the use of T3 and was an Adviser to TUK. Being a scientist/researcher/doctor and expert in T3 he was excellent and very much missed.
I had also the privilege of consulting with Dr Gordon Skinner and Dr Peatfield, both now deceased and missed very much indeed for their knowledge and ability to relieve our symptoms.
We need more doctors like these two who took the patients symptoms into account and I doubt GPs know anything these at all except TSH. and adjust up/down accordingly.
Thank you so much for writing and yes, oh how I wish there were some warm empathetic endocrinologists out there. I was well and highly active whilst under Dr Skinner with a combination of tricyclic antidepressants to combat the anxiety and insomnia, and NDT which I also took in one go. All that changed 3 years ago when the group pharmacist decided I shouldn't be on them anymore as they were causing cardiovascular problems in some people (although not me) and in fact I've had more things go wrong since coming off them than ever before in my life. Have tried every which way with alternative therapies to get myself right but I realise I can't recover from anything whilst so sleep deprived and feeling oh so stressed (not helped by endo's) so at long last GP has agreed that she would prescribe them again so some hope on the horizon once again. I can't thank everyone enough on this forum for all their help and caring attitude which means so much when the going gets tough.
To think that Dr Peatfield and Dr Skinner - both knowledgeable about dysfunctional thyroid glands - why not nowadays? Why has 'suppositions' overtaken good knowledge of 'common' autoimmune diseases?
They were also so kind and concerned to get the patient on the right dose.
Dr Peatfield resigned his licence as the 'authorities' were after him for prescribing NDTs instead of levo. He appeared before the GMC (I believe) and couldn't bear the strain. Dr Skinner was also pursued as if he was a criminal, when the fact was that both doctors put their patients onto a steady road and to be symptom-free.
Dr Skinner's staff and they were so upset - after his demise - have now collated all of their 'scientific evidence and were hoping to publish when they had sufficient funds and they stated the evidence would 'shake up the organisations.
Absolutely agree with you - the proof is in the pudding as I only found out about this forum 2 years ago as I didn't have a need before and only read up on hypothyroidism all those years ago as I thought I had that for life after thyroidectomy. Looks like my luck has now run out but I know I shouldn't complain after reading so many sad and awful stories on here. Take care!
Thank you als Espeegee for your input - as I said to Pennyannie I seem to have jumped out of the frying pan into the fire from going to one endo to another who believes blood tests are the holy grail. Yes, you could well be right with regard to liver problem and will investigate further although weight has never been an issue for me and if anything I could do with putting some on as I'm now down to 8 1/2 stone which is the least I've ever been in my life. I think both you and Pennyannie have confirmed in my own mind that I need to ditch both endos as they are clearly causing me more stress - thank you again!
Obviously a well informed doctor - mine has always been 0.01 for years and after reading up on this forum I at least now know how unimportant it is. Thanks for writing!
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Endo is really confusing me re T3 dose - can anyone help please?
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