Results help please- Over medicated?

[Rhsana]

Hi All,

So I finally had my first endo appointment on the NHS......what a disappointment that was. I have been feeling better since starting the candida diet, but this endo dismissed that and said that from my results I was WAY over medicated, that I am on an "industrial amount of T3" and that my heart will give out if I keep this up. He then looked at my blood results from before being medicated and said that those results were absolutely fine and that I should never have been put on Thyroid medication and that he "would feel less anxious if we could just get my TSH back to where it should be between 1 and 2". It took all my will power not to smack him.

Ok, so from these results it does look like I am slightly over on the T3- happy to reduce that a little as I am feeling a bit better, so the less I take fine with me, its not cheap! But is one point over the range really cause for such concern? I do not feel over medicated. The endo wants me to come of ndt and go on levo (PLEASE NO!!) and lower my T3 and eventually lower all meds until I am "back to a range that he is comfortable with" Thoughts?

R xx

P.S I was given B12 loading injections so thats why that is high. Should I worry about Folate?

[Clutter]

Rhsana,

If you left 12-24 hours between last dose and blood draw your FT3 is mildly over range. I suspect it is the suppressed TSH upsetting your endo.

If you feel better on NDT than Levothyroxine why would you switch back? The point of seeing an endo isn't to get your levels "back to a range that he is comfortable with". On the other hand if you aren't going to follow his advice and treatment plan there's no point in continuing to see him.

High folate is not a problem when B12 is normal.

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I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions.

[Rhsana in reply to Clutter]

Hi Clutter , thanks for your reply. Yep I left 12-24 hours between dose and draw. I feel better on T3, not so sure about NDT, I had come of NDT before seeing him and was just on T3 but that was only for a couple of days after the blood test. I have now gone back on to NDT and T3 he wants me to lower my does from 3 grains of 'NDT and 50mscg of T3 (in two doses)' to '1.5 grains of NDT and 25mcg (in two doses)' I don't mind going for a lower dose to see how I fair on that, I just do feel like it is pointless to try and appease him as you say- its my TSH levels he's really bothered about. I went to see him as I was hoping to get my private diagnoses supported by the NHS. I see not that was very wishful thinking. I am shocked though at how ruthlessly respected Endo's with push their own narrative, and not listen to the patient in front of them.

[Clutter in reply to Rhsana]

Rhsana,

If you were taking 3 grain + 50mcg T3 when you were tested it's rather drastic to reduce NDT and T3 doses by half unless the aim is to raise TSH. Reducing T3 dose to 40mcg will be ample to drop FT3 into range.

[Rhsana in reply to Clutter]

Thanks Clutter ! I think thats what I will do. And not bother going back to that Endo. R x

[Kitten1978]

Rhsana,

I'm sorry you had a disappointing appointment with endo. We all want to believe that doctors will do their job and help us recover but it's not a common experience among hypo patients. Good thyroid doctors are few and far between ;( I personally completely lost faith in medical profession after I was told to take synthetic T4 and ended up literally poisoned. I had enough common sense to stop taking it... I'm glad that you are feeling better on ndt

[Rhsana]

Hey Kitten1978 , thanks for your reply. To be honest, I do not know if I feel better on NDT...the only change so far has been from following a strict candida diet. I am in week 3 of that, and it seems to be working, I suspect, the ndt and the t3 are also helping me feel better but I was not able to notice it before because the candida was so bad. I was very upset originally with how this particular endo was with me, though not suprised. Its just very jarring when some one who is supposed to know better! R x

[Kitten1978 in reply to Rhsana]

I'm glad that the candida diet is helping

It's unbelievable that people with potentially life threatening condition like hypo get such inadequate medical treatment ;(( I'm sure it will change one day but it will take a long time. Part of the problem is that we feel so unwell and end up spending money on tests and thyroid meds that none of us has resources and energy to take the Trusts/endos to court.

I've been through some intimidating and very unhelpful endo appointments - I know how it feels. Part of me feels sorry for them: they are pathetic if they are unable to listen and help their patients.

At least we have forums like this one with many very knowledgeable members who are actually trying to help

Take care x

[Rhsana in reply to Kitten1978]

Indeed. If it wasn't for this forum and the people on it, I would still be feeling like I was going crazy! R xx

[Kitten1978 in reply to Rhsana]

Absolutely, so would I! xx

[diogenes Remembering]

Here we go again! Reference ranges being used as goalposts (in or out of the range by 0.1 unit for FT3, when the inaccuracy of the measurement could be 4% either way - 0.2 units above or below the stated value). By all means gently lower the T3, say to around 6 but don't expect the TSH to rise a great deal. TSH ranges obtained from healthy people don't apply to those on therapy. These socalled experts really have no grasp of how to interpret values with respect to the reference range. If your FT3 had been 10 say then I would say things are out of kilter, but just above the top limit? Hardly a case for panic.

[Rhsana in reply to diogenes]

Thanks diogenes , its comforting to hear that! R x

[Ruthi]

What a load of hairy dangly things there are coming out of your endo's mouth!

The range means that if you have 1000 healthy people 95% will fall inside 'the range'. Which means that 50 of them will be outside the range without taking any medications at all! Then you add the fact that we aren't healthy, and are taking drugs that cannot possibly be a perfect replacement for what we should be producing naturally, and you begin to see how illogical it is to stick rigidly to the range without looking at how the patient feels.

Interestingly when my dog was diagnosed hypothyroid they had one range for healthy dogs, and a higher one for those on levothyroxine. I have yet to hear of a dog breaking bones, or dying of heart failure while treated!

So I take NDT and have done for about 15 years. My TSH is zero, due to the T3 content of the NDT. My heart is fine, and I was osteoporotic before I was hypo (it runs in the family), but my bones have got no worse in the last 15 years. I feel best when my T3 is slightly above range. I know this and tend to reduce my dose a bit in the weeks running up to blood tests. I am lucky to have a supportive GP but I don't want to put him in the position of worrying about something unimportant. He accepts the zero TSH but I don't want to push it.

I am NOT suggesting you dupe your GP. Just telling you what my solution is.

[Rhsana in reply to Ruthi]

Yes, it did feel like scaremongering on his part! Thank you for your message Ruthi its reasuring to hear everyone's response on here. I felt very dumbstuck yesterday after the appointment! I think I might just write him a letter explaining why I won't be continuing treatment with him. R x

[Hidden]

My TSH is at 0.4 and my t3 over but feel great. It's more about how you feel than how it looks on paper.

[Glynisrose]

Go by how you FEEL not numbers. Argue with your doctor if necessary its your health and your life so stand up for it.