To the wise oricles and sages in the group, please could you guide me with my Atrophic Autoimmune Thyroiditis. Despite waiting soooo long to get a private test result, I had been preparing myself for "within range" results. (How sad is that?) I know I probably should be happier with the results, but it gets me nowhere medically.
Could anyone please advise me on how I can use these results to work with my gp. I'm currently on 150ml of levo but if I increase to 175ml I end up with overmedicated symptoms. I've tried jumping all through the doctors hurdles and it's got me nowhere, just managing my day to day existence, 45 feeling 85.
My top symptoms are fatigue, Oedema (mostly facial), joint and muscle pain (oh my hips), swollen glands/lympnodes and a transient brain/neurological symptoms. I have been suffering with pretty continued throat pain for the last month+ along with jaw/neck ache and now migraines on and off.
The only other time T3, antibodies and cortisol were tested was back in the early days of diagnosis in 2018.
T3 = 3.2 TPA = 269 Cortisol = 194
My last blood test was TSH only in January @ 14ml where I had a dose increase from 125ml to 150ml (150ml was previously giving me overmedicated symptoms). My Foliate was also low so this could have been confusing the symptoms and I wonder if I end up anemic over winter as past patterns have shown a dose shift needed over this period. I'm looking at trying vitamin D again but I quickly seem to overdose, so normally just up my mushroom intake etc.
Thank you so much for taking the time (sorry for the long post). Without these groups, I honestly don't believe I would be here having any sort of life today.
Written by
SarahFrmKent
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Your T4 to T3 conversion is poor .....indicated by high FT4 with low FT3
Increasing your T4 dose won't help because your body isn't converting it adequately to T3 so the extra T4 will be converted to reverse T3 which will be metabolised and excreted having done nothing to help you.
Your FT4 is 78% through the ref range
For good health almost every cell in the body needs to be flooded with T3....your FT3 level at only 37.03% through the reference range is most likely responsible for your symptoms.
Both Frees should roughly be approaching 75% through ref ranges
Your symptoms indicate hypothyroidism....low cellular T3.
Your medics should understand this but unfortunately thyroid knowledge amongst them is frequently poor
Essential to optimise vit D, vit B12, folate and ferritin to support thyroid function / conversion. You need to work on this....has this been suggested?
Optimal nutrients...
Vit D: 100-150nmol/L.....71 is too low
Vit K should be taken in conjunction with vit D they work together synergistically and ensure that calcium obtained from food is deposited in the bones and not in the arteries
Active B12 .... 100 plus
Folate: at least half way through range
Ferritin: half way through range although some experts say the optimal ferritin level for thyroid function is 90-110ug/L
Thyroid antibodies are high indicating Hashimoto's disease. A gluten free diet is recommended.
Suggest you ask your GP to refer you to an endocrinologist on the basis or poor T4 to T3 conversion and consequent low FT3
The addition of a little T3 should help overcome this low conversion but it has to be initiated by an endocrinologist
Wow, what a detailed response. Thank you so much for taking the time. My gp is diabolical for nutrient levels. They've only just upped my folate from their placebo 5mg a week after I kicked up about their lack of monitoring and it turned out I was anaemic again. They won't test for vitamin d (blames the labs) despite having previous issues. When the gp did suppliment vitamin d, she quickly stopped it as I my levels went too high. Although I'm now not sure if it was due to their bad tablets and no cofactors.
I've tested negative for coeliacs and was advised that going gluten free was not necessary, but have since read about the antibody confusion. It terrified me to be honest as being difficult and expensive. I did cut out soy, caffeine and processed oils etc. I reduced my sugar, cook everything from scratch and try to suppliment my nutritional levels via food. Brazil nuts for selenium, extra mushrooms for vitamin d etc. I know there's always room for improvement but I guess I'm really not quite hitting the mark as well as I thought.
You're not wrong about the lack of knowledge. Even amongst the endocrinologist, it's bordering negligence. I've long had suspicions about a conversion issue but not had the brains to argue my case and have been continually dismissed. I was prescribed liquid levo and told basically, to keep quiet or they would remove that. I thought I was going to die on the tablets. I've saved the money for private tests in hope that it would help me compile evidence to build a case. Your detailed response with percentages is such a great help. I hope it will make my gp listen and take me a little more seriously. Your reply is really, really appreciated. I hope you've had a lovely weekend.
You can't rely on doctors to sort out your nutritional deficiencies, they know nothing about it - even less than they know about hormones! If they do grudginly prescribe something, it will always be the wrong, cheapest form. And never enough to help.
Vit K should be taken in conjunction with vit D they work together synergistically and ensure that calcium obtained from food is deposited in the bones and not in the arteries
That is vit K2-MK7, not K1. And you should also take magnesium with vit D because they work together. It's possible that your vit d went too high before because your body wasn't using it, due to low magnesium.
GPs cannot prescribe T3, I'm afraid. The first prescription has to come from an NHS endo, and then the GP - in theory - takes over prescribing. But, first you have to get referred to an endo. And, you have to chose your endo carefully, because a lot of them are anti-T3.
I hadn't considered splitting my dose. I had only ever thought of that as a T3 thing? I was going to request a dose rise to 175/150mg on alternative days, along with asking to double my folate. I have also been recommended a D3 3000iu / MK7 K2 50mg but I was worried that was quite a high dose? I didn't want to end up toxic again, as my gp put it.
I went down the endo route in the early days and it was diabolical. It just resulted in me wasting nearly 1 1/2years of my life and being gaslit through the PAL'S system. I then told the quacks were to shove it, created a recovery program for myself (liquid T4 helped) and got myself to the rollacoaster plateau I'm at now.
I downloaded the endo list yesterday but sadly can only see one (not sure if I'm allowed to name them?) in Kent who works at 10 locations across Kent and London on both NHS and Private. The other has retired to private only and another has moved areas. Not good odds considering how many endocrinologist there are across the county. London is shocking only showing 1 NHS questionably friendly thyroid doctor too. I suppose I should be grateful. Some counties such as Northamptonshire are showing none. I looked as I live on a boat itinerantly so could possibly have the option of different areas such as Oxfordshire.
I think I am still going to avoid the endo route for now. Even if I do get lucky enough to find one that's not going to be completely disrespectful and waste my time again, the dose they offer is often too low to be effective in my understanding. They are also unwilling to monitor my cortisol which I believe swings low but not low enough to concern them.
I think instead, I will focus on my nutrition, which has lapsed admitted. Back on the daily nut dose. Find a decent Vit d (any affordable recommendations welcome) and focus on the dreaded gluten. I love to bake, I make my own bread and biscuits, no shop stuff for years. Any gluten free websites or guides that anyone can point me to please?
Thanks again for being guardian angels and taking the time to read my waffle. You are all lifesavers, like you wouldn't believe.
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