Hi folks, I've been on and off this forum over the past year and currently not taking any meds. I had a follow up with my endo last week and he has suggested trying me on low dose of t4 to start off and a review in 6-8 weeks. He does state my bloods aren't bad but maybe I would feel better with my t4 and t3 up a bit. He said the idea is the t4 will also convert to t3 and if I don't feel better then he will see how the conversion is going and is open to try me on some t3 but will cross that bridge when we come to it . He didn't retest my bloods from they were last taken in June/July and just seemed more interested in my symptoms. My bloods in june/ July were
T4 16.6 range 12_22
T3 5.2 range 3.6-6.8
Tsh 0.27 range 0.27 - 4.2 he isn't concerned by the tsh. He is a private endo and I know my cousin had great success with him prescribing her t3
The worrying thing is I had an nhs appointment last week with an endo, head registrar and a junior doc and they took a lot of bloods and said if there is something wrong they will be in touch and of I don't hear from them then all Is good. Whilst at this nhs appointment they went through the blood results my GP has taken over the years and said In 2012 and 2015 I had an over active thyroid. This was the first I had heard of this. Anyway they based that decision on my tsh which was 0.24 in 2012 and 0.20 in 2015 so basically they think I was overactive but the private endo said no I am not over active based on my t4 and t3 and kind of rolled his eyes when I told him about my NHS appointment last week. Hard to know who is right or wrong. The private endo knows my family history of underactive thyroid and also he was the one that discovered the nodules when everyother medical professional I came into contact with just rubbished me so I'm hoping he is correct.
Do you think the nhs guys are wrong or the private endo?
Also, you hear so many people saying t4 is no good so I'm concerned it will be no good for me also but I know a friend who has recently been diagnosed with underactive and she is on t4 and said she feels amazing, she has so just become pregnant from starting the t4 which was how the thyroid issue was noticed in the first place so is it just some people that struggle with t4 only
Thanks
Jennifer
Written by
Irishjen
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I think the NHS endo are talking utter rubbish! You cannot possibly diagnose someone as hyper based only on a TSH of 0.24. It isn't even suppressed!
I don't know if your private endo is right, but I what I would say is that he should be testing your antibodies. It's all very well to go by symptoms for hypo, but you really do need to know if you have an autoimmune disease - Hashi's.
The majority of people do well on T4. It's just us odd-balls that don't. I think the reason for me is that I was left hypo/Hashi's for about 50 years without a diagnosis. That's bound to have an effect! But, we're all different. And, there's no harm in trying the T4 and see how you get on with it. Nothing ventured, nothing gained!
You're absolutely right about nothing ventured nothing gained. It's the first time I've left a Dr appointment and feel a glimmer if hope. He did test antibodies in June and said I don't have hashimotos he didn't do both tests though just the peroxidise one (if that's how it's spelt) I asked him outright last week do I have hashimotos and he said no, I said but there's 2 tests for antibodies and he said yes there is but you don't have it. I just left it at that for now.
Meant to say yes I did think the nhs ones were wrong but was doubting myself and in a way doubting my endo although I don't want to doubt everyone as it's quite exhausting.
It makes an enormous difference when a doctor listens to the patients and takes note of the clinical symptoms which the majority do not and who leave the patient suffering until the TSH qualifies us for a prescription.
There is nothing wrong with giving a symptomatic patient a test run of levothyroxine.
Well this is the 2nd time I've been to him the first time he wasn't up for giving me anything but when he asked about how I was feeling he agreed to try me on some t4 and also wrote a note to my GP to prescribe me v but thiamine b6 and b12. Can't wait to see my GPS face when I turn up tomorrow with the letter from the endo to write me a scrip for t4 and the b vitamins. 😂 I also told him my cousins t3 has been stopped by GP and he said medically if she does better on it she is entitled to it and for her to come see him and he will sort it out.
That is very considerate of him and he is right but the majority of doctors whose patients take T3 have removed it - just like that leaving patient in a state of stess and bewilderment. It was stated in the recommendations that if patients have a clinical need it should be prescribed.
Yes thats what happened to my cousin. He wrote to her GP years ago to prescribe t3 and then just recently she had it stopped. I told him this when I was there last week and he said he would sort it if she comes to see him
If you did not get his name from TUK, email louise.roberts@thyroiduk.org.uk who has a list of sympathetic Endos if you didn't get the name from her. She will add it to her list.
It's not just that there are two tests, it's that antibodies fluctuate, so just because they're low today, doesn't mean they're going to be low tomorrow. You need at least three negative tests to really rule it out.
Go gluten-free, take selenium, and keep your TSH suppressed.
Also, understand that levels are likely to shift around and that your FT4 and FT3 could suddenly go high for no reason, and it doesn't mean you're under-medicated, or that you've been 'abusing' your 'meds'. It just means you've had a Hashi's attack. Something doctors don't seem to understand!
You really need both antibodies testing - thyroid peroxidase (TPO) and Thyroglobulin (TG). You can be negative for TPO but positive for TG. Also, one negative result doesn't rule out Hashi's, the test could have been done when the antibodies were nice and low, and another time they could be high due to their nature of flucuating.
Also, don't let someone else's experience with a certain thyroid medication put you off trying it. We're all different. As Greygoose has said, most hypo patients do well on Levo but you don't see them posting on here because they're doing well and getting on with their lives. I did well on Levo alone for 20 years but long term hypo took it's toll and I eventually found out that adrenals weren't brilliant and sex hormones were more or less non-existent, and vitamins and minerals were trashed so I wasn't converting all that well.
Along the way I've tried NDT, it wasn't right for me, NDT plus T3 didn't do anything, T3 alone wasn't right either. I'm now on Levo plus T3 and that's right for me at the moment. So it really is a case of try it and see how it goes.
Makes sense I suppose it's only the ones who are struggling seek help on forums. Will definitely have those tests done and see how that goes. Thanks for your advice
Re a doctor needing to take symptoms into account rather than relying on blood tests - I think both should come into play in the doctor's evaluation. The private Endo seems to be overlooking the last blood test which to me showed your thyroid working v well, Jen and not requiring any replacement treatment even on a trial basis.
I realise I go against the other comments with this but someone has to raise the issue of appropriate prescribing of thyroid medication for when the need is actually demonstrated!
The need is demonstrated, my t4 has dropped from my tests in march, I have so many symptoms of a thyroid problem, I have thyroid nodules, most females in my family have a thyroid problem, the endo knows I feel alive when I've taken some ndt in the past and there is some room for my t4 to increase. I would rather he tried to help me than leave me to feel miserable. Many people feel better when the t4 is at the very top if the range so why not try and see if I am one of those many people. Why does ndt solve all if my symptoms if I have no need for it? It's only a small dose of 25mg.
Thank you for filling me in with more of your health details, Jen. I should be writing my response to NHS England stating my case for Liothyronine not being restricted on the NHS so I'll make just one further comment with relevance to your situation. You may or may not be aware of the fact that thyroid nodules can cause hyperthyroidism in a minority of patients - a fact I came across yesterday. Obviously blood tests can pick up on this and it is not so likely to happen but worth bringing up I thought.
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