Further to my post from several days ago, I have done a full update on thyroid and adrenal tests done in Dec 2022 and posted these on my profile. After an appointment with an endo in Dec 2022, I am no further forward . I was asked what was my thyroid condition like I replied the mental and physical fatigue was at its worst . Following the results from this appointment absolutely nothing has been prescribed so I now have to take full responsibilty . I was treated with RAI in 1996 for an overactive gland and this made me underactive and feeling weak. I have been taking Levo since then and no matter which brand or dosage either 100mcg or 200 mcg it does not make me feel better. After reading the book by Paul Robinson it clearly states that most of the conversion from T4 to T3 takes place in the thyroid , but its activity has been substantially reduced by RAI. I feel that I have to experiment and discontinue Levo and try T3 only . The most recent brand I have used of Levo is made by Accord and the batch number on the pack does not match those quoted as causing recent problems.
Experimenting with T3 : Further to my post from... - Thyroid UK
Experimenting with T3
22nd Dec 2022
Appointment with endocrinology Royal L'Pool Hospital
Blood test done TSH 2.4 range 0.27 to 4.20
Free T4 13.2 range 12.0 to 22.0
4TH JAN 2023
TESTS DONE BY GP INC THYROID
SERUM TSH 6.60 Range (0.34 to 5.44)
SERUM FREE T4 13.5 Range ( 11.5 to 22.7)
Clearly after both these tests you needed dose increase in levothyroxine
Generally it’s better to increase levothyroxine BEFORE considering adding T3
what vitamins are you taking and what are most recent vitamin results
Are you gluten free and dairy free
Thank you fore your reply. I am taking a quality Multi vit tablet made by Seeking Health but it does not include Vit B12 Folate Ferritin or Vit D . I have had numerous tests done by the private labs over the last 5 years and topped up those above but it has not made any difference. I have been gluten free for the last 6 months and replaced milk with almond milk but in order to increase the amount of protein in my diet I am taking fat free yoghurt which includes milk products. I had a lot of private tests done whilst under a Func medicine doctor back in 2020 and any deficiencies were corrected.
multivitamins never recommended on here
healthunlocked.com/thyroidu...
healthunlocked.com/thyroidu...
Most contain too little to improve low levels and contain iodine not recommended for anyone on levothyroxine
Suggest you stop multivitamins and actually test vitamin D, folate, B12 and ferritin
Test vitamin levels at least once a year
Why wasn’t dose levothyroxine increased by 25mcg
Suggest you do that now and retest in another 6-8 weeks
Meanwhile get vitamins tested and improved to optimal levels
Try oat milk rather than almond. Not a good idea to have almond milk everyday on levothyroxine
delboy25 'I feel that I have to experiment and discontinue Levo and try T3 only . '
4TH JAN 2023
TESTS DONE BY GP INC THYROID
SERUM TSH 6.60 Range (0.34 to 5.44)
SERUM FREE T4 13.5 Range ( 11.5 to 22.7)
If you've never taken any T3 at all, T3 only is much too big a jump. It would be a lot more sensible to do a slow introduction of low dose T3, adjusting levo accordingly as you go. Many people find a relatively low dose of T3 alongside levothyroxine works well for them. Don't throw the baby out with the bathwater!
Your last TSH and FT4 numbers are far from optimal. Adding a low dose (e.g. 5-6mcg) T3 to your current levothyroxine dose would be a good starting point.
And if you're going to take any T3 at all, you will need to start doing self testing to keep an eye on all your levels. NHS never test FT3. Get a basic TSH, FT4, FT3 test done asap before you start on any self medication, so that you have a starting point for comparison. This one is good value. monitormyhealth.org.uk/thyr... Use code THYROIDUK10 for 10% discount.
Hello Delboy :
Having a quick look back I see you had RAI thyroid ablation for an overactive thyroid - so guess diagnosed with Graves Disease way back then.
I had RAI for Graves 2005 and became very unwell around 8 years later and finding no help nor understanding from the medical mainstream started my own learning curve.
In around 2015 I started reading Elaine Moore's first book sent to me from a thrift shop in the States - Graves Disease - A Practical Guide - thinking maybe that Graves has come back only to read it never went away as I was dealing with an auto immune disease for which there is no cure.
Since Graves is considered life threatening by mainstream medical the thinking is that by taking RAI - a toxic substance - it will just burn through part of the thyroid and the overactivity then not as acute.
I read the dose of RAI not as scientific as one might think and the consequences of ingesting this toxic substance are now known and that it is taken up, to a lesser extent, by other glands and organs within the body.
I think it's also a given that eventually the thyroid gland is totally burnt out and destroyed and the patient very much primary hypothyroid and I do not understand why this treatment is still encouraged in a health care setting but for the obvious cost benefit to the hospital.
ncbi.nlm.nih.gov/pubmed/306...
The most recent research is suggesting that the longer the patient stays on the AT drug the better the long term for the patient ;-
pubmed.ncbi.nlm.nih.gov/338...
Anyway - we are where we are and yes. I'm self medicating with Natural Desiccated Thyroid.
I see you posted about this treatment option - did you try Thyroid S ?
I found T3 - Liothyronine too turbo charging for me - but I was very brain fogged at the time so likely doing it all wrong.
I too had the Short Synacthen test but was told I was fine !!! and then read that this test is not sensitive enough and really only useful in help diagnose a patient with Addison's Disease.
My other go-to book has been Barry Durrant-Peatfield's - Your Thyroid and How To Keep It Healthy - as though I now do not have a thyroid I do need to know what the consequences are throughout my body and repair same as best as I can.
Apologies if I have written this all to you before but your name rings a bell - though haven't looked back too far in your journey to find out - could be through watching too many repeats of Fools and Horses !!!
Hello Pennyannie.
Thank you for your reply and for sending me the links regarding RAI. Reading them makes me feel very worried . I was offered 3 choices back in 1996 Carbimazole tablets , I tried these but they made me brain dead, I was offered an operation to reduce the size and activity of my thyroid. This did not appeal to me . I said to the consultant that I did not want tablets for the rest of my life so that was the reason I turned down Carbimazole and an operation. I honestly thought at the time I did not want anything radioactive in my body but decided to go ahead. Unfortunately it reduced the activity of the thyroid so much that I felt physically and mentally worse and told that I was underactive and would have to take thyroxine for the rest of my life.
I did self medicate with NDT after attending numerous meetings with Thyroid UK .That has been in the last 5 years. The steward was on Thyroid S so I followed her lead but unfortunately they did not make me feel better. I still have the tablets , they are out of date.
I have on my NHS medical records that I have CFS since 1977 and I honestly thought back in 1996 when I fainted twice and they discovered I had a very overactive thyroid gland that they had cracked the case .Back then I did not have access to the internet. I have recently bought the new book released by Dr Sarah Myhill "Fix your thyroid - because your doctor will not." Reading the preview she recommends using NDT.
I have read the book by Dr Peatfield- it was the first book recommended at the local thyroid UK meetings., and I would recommend it to any newcomer to the world of thyroid disease.
I am now a patient of the Optimum Health Clinic in London - consultations are by Zoom- they are specialists in CFS and the thyroid is definitely taken into account. They have corrected my diet , recommended many supplements targeting building up the immune system, any gut issues. They are very professional and they only deal with patients with CFS and most of the therapists have had CFS possibly caused by thyroid problems, parasites viruses , bacteria and metal poisoning.
After 46 years of the illness I still do not know what I have . It was explained to me by a very good homeopathic doctor 25 years ago that he was convinced there was something locked in my body which was shorty circuiting my energy levels. Whatever it is , it is a major hormone disruptor. I have had many appointments with Bioresonance and they seem to think it is Lyme disease. After many hours of treatment with no improvement, I decided to take the advice from the book by Dr Myhill on CFS and have the blood test done by Armin Labs in Germany, cost £750 but Lyme disease had a very low reading.
I may decide to keep on the Levo and take T3 in small doses. In the last week I discontinued Levo and started on 25 mcg of T3 only.
You mention that you are on NDT Thyroid S . Do you just take this or is it in addition to Levo?
Can you let me have the name of your supplier because if I take out of date tablets they may make me unwell.
Best wishes.
So presume you have Graves Disease - this may or may not have been mentioned to you as it seems a poorly understood and badly treated auto immune disease and the main reason why people become ' over active ' and offered these treatment options.
I was told I had Graves and though well on the Carbimazole was told at my very first endo appointment that the AT drug was too dangerous to stay on long term and that I would be having RAI thyroid ablation the following year and would likely become hypothyroid and on medication for the rest of my life, but that hypothyroidism as easily treated.
Had i had an option I would have stayed on the AT drug - and there is an option to Carbimazole - were you offered PTU - Propylthiouracil ?
In a nutshell - with Graves you have both blocking and stimulating antibodies ( TR ab and TSI ) and at any one time either of these extremes can be fighting for control of your thyroid and there are also phases where these two burn themselves out leaving you feeling ' relatively 'normal ' though likely totally exhausted from this roller coaster of events.
When Graves attacks the thyroid the symptoms can be seen as life threatening as the thyroid is a major gland and responsible for full body synchronisation, which includes your mental, physical, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
So, the Graves is seen as treated - you are thyroid=less and your HPT axis - the Hypothalamus - Pituitary - Thyroid feedback loop does not respond as there is no thyroid there to close the loop.
You have been flipped from hyper to hypo - automatic transmission to manual - your thyroid function is null and void. and you need to take take tablets everyday to stay alive and you may still have Graves antibodies circulating and distorting your blood test readings especially the TSH - which sadly seems to be the gold standard rather than the limited diagnostic tool for hypothyroidism that is was intended to be.
So, anyway - you have 3 main treatments options - and see you considering T3 monotherapy now.
i haven't tried that as I found myself a bit turbo charged and with horrible headaches when I trialled a T3/T4 combo.
No thyroid hormone works well until your ferritin, folate, B12 and vitamin D are up and maintained at optimal.
I'm 5 years in now on NDT and find it softer on my body and of all the options this seems to me the most full spectrum and the best option for me - it doesn't replace my thyroid - I'm not where I was - though looking back I've been undiagnosed hypothyroid since a child, and growing up undiagnosed dyslexic and left handed - which according to Elaine Moore both " afflictions " found at a higher prevalence in people diagnosed Graves !!
P.S. I just take NDT - there is a unique ratio of T3/T4 in NDT which suits very many people very well :
I stopped 125mcg T4 one day and started on 1/2 grain NDT the following day and slowly increased my dose weekly in 1/4 grain increments monitoring on blood pressure, pulse and temperature twice daily.
T3 Trial and feeling worse
Introducing T3
Dosing with T3
Some issues with levo+T3, help please.
