I really don't know where to start with all this as it is a bit confusing and complex. 20 years ago i was diagnosed with Hypothyroidism and i was prescribed Levothyroxine and my health rapidly declined. I spent 6 years housebound as i was so poorly and despite may trips to the GP and numerous tests i was told there was nothing else they could do for me. I decided to do research and found out about NDT so decided to give it a go because after all what had i got to lose.The NDT helped me to get my life back even though i still never felt 100% but i was living again rather than existing. Fast forward to the last couple of years and i began to have hormonal problems( post menopausal but high oestrogen levels and high testosterone).I was diagnosed with fibroids, endometriosis and adenomyosis.In November last year i decided to go and see an endocrinologist again as i felt the high hormone levels could be causing the fibroids, endometriosis and adenomyosis. She did more hormone tests and the results still came back high but seemed more interested in my thyroid levels and suggested that i may not even be hypothyroid at all and to find out if i actually needed any medication.At the time i was on 3 grains of Armour and she told me immediately to drop from 3 to 1 grain for a month and then retested. At this stage she then told me to stop all thyroid medication completely and to stay off the medication for 2 months. I managed to hold out for a month and told her i felt so poorly i couldn't continue like this.She suggested that i should go back on levothyroxine(i had always said i would never go back on it) and recommended a levothyroxine with the least fillers. I lasted about 18 days and felt so dreadful and the pain levels were through the roof so i stopped taking them. A couple of weeks later i went back to see her and she prescribed T3 only on a private prescription which i tried for about 2 weeks and the pain came back with avengence so i have now gone back to the Armour at 1 grain and hope to build back up to 3 grains.
The latest results show what my levels were like on 10 mcg of Liothyronine
CRP LEVELS 11.89 Range 0-5mg/l
FERRITIN 73.89 Range 13-150ug/l
FOLATE 6.73 Range 3.89-19.45ugl
VITAMIN B12 132 Range 37.5-150 pmo/l
VITAMIN D 102 Range 50-200 nmo/l
TSH 8.31 Range 0.27 -4.2mu/l
FREE T3 3.95 Range 3.1-6.8pmo/l
FREE THYROXINE 11 Range 12-122pmo/l
Thyroglobulin 10 Range <115 iu/ml
Peroxidase <9 Range <34 iu/ml
I would just like to see if anybody can give any help on these readings and what you think i need to do to help improve my health. Any help will be gratefully received. Thanks in advance.
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mackers63
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Firstly I'm sorry your Endo tried to remove you treatment. This should never happen. You're clearly hypothyroid and need replacement thyroid hormone for life.
CRP is raised which is a non specific inflammation marker. Mine resolved with optimal vitamin levels.
Ferritin could be little higher to 100. Try increasing iron rich foods such as chicken livers/pate.
What supplements do you take currently? You've previously been folate deficient and its low again. Most people need to continuously supplement to keep levels OPTIMAL. Would recommend a good B Complex such as this one with methyl/active vitamins. amazon.co.uk/Liposomal-Soft...
Theres not much point commenting on the thyroid results as you have now changed your treatment and will need to slowly work back up on the NDT. It might be better to find an NDT friendly Endo.
We really only need to supplement the key vitamins that we have tested and found to be low. The B complex would really help you and you would need to take it long term.
Make sure to take the magnesium a good 2-4 hours away from anything else especially NDT.
NDT Endo's are limited, you may be able to get a zoom consultation with one so do check if out of your area. Email info@thyroiduk.org for the list.
Probably finding a different (NDT friendly) Endo would be the single best thing you could do for your health other than working on folate/ferritin.
So sorry this has happened to you. Cruel beyond words and not the first person on here to be told to come off Thyroid replacement therapy. There was someone a few months ago wasn't there tattybogle ?
When you come to source another endo look at their specialism if they are a diabetes specialist - unless someone (preferably more than one) has specifically recommended and had a good experience, give them a wide berth. SO many are not thyroid specialists and we see horror stories regularly on here.
Also I have seen accounts of 'the script changing' between folk seeing the endo privately and then seeing them on the NHS. It would seem some endos feel they have less latitude when consulting for the NHS and people don't get the same experience.
Do what suits your health - not their lab work and after this debacle do not feel trepidation regarding putting your foot down politely and firmly. You are in possession of the most valuable diagnostic tool - your symptoms. Blood tests are there to aid not to replace symptoms - they need reminding of this.
If you can get records of the treatment - I would for future reference. I keep my own records and self advocate. I was mismanaged at the start and made ill - and I wasn't even a difficult case, so no second chances for them now I'm afraid.
Thank you for your reply, i really appreciate it.I just feel like i have wasted 4 months of my life because i was told that maybe i didn't need thyroid medication.I obviously did and now i have to spend months again building up to the dosage i was on before i went through all of this. I will continue to self medicate now because basically i don't trust anybody any more. It is awful that so many people are being treated like this. Thanks again.
First of all, I’m furious on your behalf you’ve had to go through such poor treatment by this so-called Endo. It beggars belief that such idiots exist—but they do, and far too many of them at that. I’m so sorry. x
Those blood tests show that 10mcg T3 is and will never be enough for you. And for what it’s worth, I think getting back on NDT probably is the way to go. Without knowing what your blood tests were like on 3 grains, it’s hard to know why you still didn’t feel 100% but that’s not unusual, sadly. I’ve never quite cracked it either (I’m a 3 grains a day person too, basically I’ve just had to learn to pace myself and put boundaries in place to stop others expecting too much of me—not easy as a life-long people pleaser).
Quite unusual to have fibroids post menopause, I think? Are you absolutely definitely post menopause? Given your endo decided to take you off all thyroid meds I’m not sure I’d trust a single thing they said but presumably it was a gynaecologist who diagnosed them and the other conditions? Did they suggest any treatment?
I have been back on 1 grain of NDT for a week but as you can imagine i still feel really awful.
My results on 3 grains were:
March 2021, TSH 0.005,Free T3 6.1, Free thyroxine 15.3
February 2022, TSH 0.005, Free T3 5.47, Free Thyroxine 14.8
September 2022 TSH 0.03 Free T3 4.62, Free Thyroxine 13.3
Ranges are TSH,0.27-4.2MU/L,Free T3 3.1-6.8pmo/l, Free Thyroxine 12-22pmo/l
Yes, it was a gynaecologist that diagnosed the fibroids, adenomyosis and endometriosis. I am post menopausal but i have had some post menopausal bleeding which has coincided each time with having the COVID injections.There has been talk of a hysterectomy if i have any more bleeds. I have had 2 hysteroscopy's and had polyps removed. I am due to go back and see the gynaecologist in April so he can monitor the situation.
I only went to see the endocrinologist because my hormone levels were high for a post menopausal woman and i have read that high oestrogen levels can feed the fibroids. I also had high testosterone levels. The endo only seemed to be interested in the thyroid levels which to me didn't seem too bad, not perfect but not too bad!!!
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