Hi, I had a recent check up with my endocrinologist. I take Erfa 120mg daily. My results were TSH suppressed. T4 9 the range being 7 - 17. I take D3 800iu. I was told nothing further can be done. I have terrible fatigue and hands and feel are always frozen. I wear socks and gloves when in bed. Is there really nothing else? Am I under medicated? The only option given to me is to be transferred to a chronic fatigue clinic. Thanks.
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Shellyjane
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Shellyjane When taking any form of T3 (including NDT), it's important that FT3 is tested. Only then can you know if you are under or over medicated. On any form of T3 TSH will generally be low or suppressed, and FT4 will usually be low. If your endo isn't testing T3 then he really doesn't know how to treat with NDT.
What is your Vit D level? 800iu daily is barely a maintenance dose for someone with a good level. Mine is within the level recommended by the Vit D Council (100-150nmol/L) which I self supplemented to raise from l15 (severely deficient) and I now have to take 2000iu daily to maintain this level.
There are important cofactors needed when taking D3
D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.
D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.
Magnesium comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds
Thanks Seasicd Susie. My endo will not test T3. He will also not test again for vitamins or other. I have autoimmune disease. I am gluten and dairy free re: diet. It is really getting me low now. I cannot concentrate at work. I have real difficulty to focus. I am not sure where to go from here. Also in the area I live the CCG are now asking for everyone to be taken off NDT and T3 medication.
Ridiculous that he prescribes NDT but wont do the most important test when taking it. I suggest you do private testing as many of us do.
You can get a thyroid panel plus all important vitamins and minerals tested with a fingerprick test from Blue Horizon (Thyroid Plus Elelven) or Medichecks (Thyroid Check Ultravit).
And if you do well on it and they remove your NDT you can always buy your own, Thai NDT is supposed to be just as good and very reasonably priced. You are obviously not optimally medicated and it doesn't seem that your endo knows enough to get you well, so you could do what many here on the forum do and help yourself.
If you could please get a print-out of you results with the ranges it makes it easier for the members to respond.
Because your TSH s suppressed they've reduced your dose as they appear to have been instructed if TSH is suppressed there's danger, but it isn't true that a suppressed TSH is dangerous otherwise why do they give patients who have had thyroid cancer suppressive doses? Seems a bit strange don't you think.
Once we are diagnosed and given levothyroxine, they should ignore the TSH in favour of how the patient is feeling, i.e. good, improved, or symptomatic and adjust dose accordingly.
If you can afford it you can have a private blood test from one of our recommended labs. They are home pin-prick tests and make sure you are well hydrated a couple of days before and that hands arms are warm if you decide to go that route.
Your Endo is being negligent I believe and I am not medically qualified but it is important that both Free T4 and Free T3 are at an optimum, nearer the top of the range rather than middle or bottom. I shall give you a link which will give a better explanation.
Also when you give resuts you have to quote the ranges as labs differ all over the UK and it makes it easier to comment.
It is a big learning curve if we're taking thyroid hormones and not improving, because we can improve if we have flexibility but sometimes it isn't forthcoming. SeasideSusie is also correct in that all vitamins/minerals have to be optimum as deficiences can also cause symptoms.
We can get there in the end so don't be too despondent.
Looking at your T4 you are on insufficient as I would expect it to be towards the top of the range if you were on optimum. T4 is inactive hormone, it has no purpose but to convert to T3. T3 is the only active hormone required in our billions of receptor cells and if we don't have sufficient we are ill.
If you take NDT they can not take it away if you have a clinical need and if there is any suspicion, make an appointment to see your local MP, far better than a letter. and you can refer him to Thyroiduk.org.uk to confirm that there is a need for NDT for many patients who are hypo.
We cannot let them walk all over us as they have a 'qualification' which isn't much use if they cannot make the patient well but will diagnose a clinical symptom as 'something else' apart from hypothyroidism.
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