Hi, so i had not long been prescribed Levothyroxine and had been taking it for about a week. I went to see a different GP a couple of days ago about something non thyroid related and they looked at my record and said that I needed to stop taking Levothyroxine because 'my TSH was not high' so I didn't need to take it - after persuading them, they eventually said that they would send my results to and endo to get their opinion, but not to take any levo until I hear back...So 6pm tonight I get a text message saying- in an incredibly blasè manner - endocrinologist says you don't need thyroxine, book an appointment in 4 weeks and we will do a full thyroid panel.
I'm so upset! - how can one GP just over rule another?? And how do I not need thyroxine when my levels are low?!
Also.. if they really don't think I need it, why aren't they trying to help me find out what IS the matter with me?!
Sorry for the rant, I just don't know what to do. I'm so upset, I've not stopped crying. I thought I was finally on the road to feeling better and now this
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If I was you I'd get a test kit from somewhere like medichecks or monitor my health and do the full thyroid panel yourself to use at your appointment as evidence. They'll most likely wait to retest tsh themselves still.
First of all, you can actually start to feel worse at the beginning of your therapy, if your thyroid was still producing some thyroid hormones; now that you are taking replacement this will probably have reduced now, so temporarily, you will have less hormones available. But slowly you will top up your levels and start feeling better. This is a natural process and can be quite daunting, but try to be patient and you will get there.
Secondly, I would tell that second GP that you have discussed your case with the first GP and that you have both have come to the agreement that you will need replacement thyroid hormones and that you would like to continue your therapy, as you are very symptomatic and really feel you will benefit from the thyroxine. Have they at least measured your T4? If your T4 was low then there is a clear need for you to take replacement, even if your TSH is not that high, as your TSH-T4 feedback might not respond like the feedback in a healthy person - after all you do have a thyroid disorder?!
I would continue with your medication, ignore the second GP you recently saw and only deal with with the first GP you were seeing and who prescribed your thyroid hormone replacement. After 6-8 weeks, you need a new set of bloods, ideally you need to test TSH, T4 and T3 to see where you are and you will need a further increase (and so on).
Have you tested your ferritin, vitamin D, folate and vitamin B12? It would be good to do this as well, as if any of these nutrients are low, you need to increase their levels, as these will help to optimise your thyroid medication and they assist with the conversion of your T4 to the active T3. It is a bit of a process at the beginning, but over the long term, you will start to feel better.
Hi, thank you for your response, that's really helpful.Well my initial blood test was done by a private GP - but I showed the results to the 1st GP at my surgery, and that's when she agreed that along with all my symptoms amd my swollen thyroid, adding in The blood test clearly shows that I am hypo.
My ft4 was 12.6 (12-22)
I have had my other levels checked and my iron was low, aswell as some of my others, so I've started supplements to boost those back up.
Yeah you're right. I'm just going to keep taking it and see the first GP when she's back in.
To be honest my GP practice is not the best, I don't know why I stay there to be honest. I might have to look into moving to a different surgery.
With your free T4 just about scraping into the normal range, it is very evident that you have a clear need for levothyroxine. Continue to take it and be vigilant in testing your levels after 6-8 weeks on a certain dose. You are then ready to increase again until you are on your final replacement dose (roughly 1.6 mcg per kg of weight, which is also stated in the prescribing guidelines).
Glad that you have started to supplement as well, as this will definitely help your body to make the most of your medication. It is a hard slog at the beginning and you may feel better some days and then a bit worse again - but this is quite normal until your levels have stabilised on your replacement level. Be patient with yourself as well, as you need time to heal and to build yourself up again. Don't worry, you will get there.
It seems that none of the GP practices these days are any good in dealing with thyroid disease -- too many sticklers for the almighty TSH and no taking into account how the patient actually feels! 🙄🫣 Stay strong and don't worry, there is good support here on this forum to help you through this difficult time! Take care.
Suggest you refuse to stop taking Levo as you would like to continue 3 months trial previously agreed
Previous GP agreed on diagnosis of central hypothyroidism so TSH doesn’t respond to low thyroid levels
If necessary go see an endocrinologist yourself
Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists
Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to NHS
My Sympathy for you. You came to the right place. If you started to feel better. Trust yourself. Don't give up and don't give in. You are your Very Best Advocate. Keep knocking on Dr's doors ask for referrals. Pharmacies are very great place to start. Ask for a Dr that proscribes thyroid meds. Find someone that is a Good listener and Thinks out of the Box. I can't say it enough. You know what you feel Best.
In addition try to test your Iron/Ferritin, vitamin B-12/Folate, vitamin D.
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