Help/advice needed underactive thyroid treatment

Hi I'm brand new to this website but looking for help and advice from any one who has been through the same thing.

I was diagnosed with an underactive thyroid by my GP in June this year. My levels were: TSH 16.8 t4 7.3. My levels are now (as of 22nd aug) TSH 5.94 t4 11.5. I started on 50 mcg t4 only levothyroxine then reduced to 25mcg as I had bad insomnia, appetite suppression, brain fog and lowered blood pressure and blood sugar Hypoglycemic episodes. I had been back and to the doctors to see various gps in a state with various symptoms and they couldn't give any reassurance other than my t4 and TSH levels had gone into the "normal range" and so they were happy with the way the treatment was going even if I was dragging myself through each day. They said my cortisol level (568) was normal as I thought I may have an adrenal problem but obviously not and that my antibody levels were high (no number was given to me). The drs then Said to come off the Levo or a week to see how I felt. I stopped it on 19th August and so have now been off it for a week. I have felt the brain fog lift a bit and I am naturally sleeping and eating better but I do feel extremely tired to the point where I haven't been out for a few days and I have felt unable to do much. But id still rather feel exhausted than all the other horrible problems I had whilst on Levo. The gps say there is no other thyroid medication available and say there isn't even any other brands available (I know this is cods wallops from all the reviews I've read) and to just "get on with taking it". I'm so frustrated and feel so helpless with the lack of support and advice I've experienced with this awful debilitating condition and wonder where to go now? I'm seeing an endo tomorrow so really hope he will be able to give much better more helpful advice. I've got the diagnosis I just haven't got the treatment I need! I'm scared to start taking supplements vitamins etc without getting advice from the endo and I really want to see if I can try t3 as well of NDT but again not sure how I go about this safely? Anyone else experience these side effects on Levo? And anyone know how to change meds safely? Do I just put up and suffer in silence or are the side effects not normal and shows I'm reacting badly and they won't go away with time using them? Any help would be appreciated so I can get energy to get off the sofa and get my life back! (Forgot to mention I have a 9 month old baby too which makes this disease so much harder to live with untreated).

10 Replies

  • Also forgot to mention docs say the normal range they use for TSH is between 0.2-4.5 they didn't give any range for t4 levels.

    Thanks in advance for help x

  • Welcome to the NHS where GPs know diddly squat about thyroid matters and do diddly squat about investigating but would much prefer to prescribe AD's.

    You've done well to get an appointment with an Endo but have you checked his/her credentials as some can specialise in diabetes?

    Can you provide your results with the ranges included?

  • Hi, yes I checked online and seems as though he specialises in thyroid disorders and diabetes. I hope this will be ok. All the other endos I've tried to get an appointment with are booked up until end of next month at least this is the only one in my area I managed to get.

    My original TSH when first diagnosed was 16.8 and now it's 5.94 (tested 22nd aug) and my t4 was 7.3 now 11.5 (tested 22nd aug).

    Docs say their normal range for TSH is between 0.2-4.5 and they didn't say what they use for T4.

  • A TSH of nearly 6 is still high. Many of the people on this forum need their TSH to be at 1 or below to feel well. It sounds as though you would benefit from the kind of thyroid meds the NHS doesn't like to prescribe, eg T3 or NDT. You should ask the endo for a trial of T3. You might not need very much by the sound of things. Hope you get sorted soon. I don't know whether you are planning to have another child any time soon but people with hypothyroidism have a higher risk of miscarriage so you need to make sure you get this resolved. On the other hand I believe some people with postpartum thyroid problems find it resolves itself within a year or two so they no longer need medication.

  • Hi eeng, thanks for the advice. I will ask him for a trial of t3 today let's hope he will give to me as I have never had my free t3 level checked (rubbish GPS have refused to check it) so maybe he could check that as well. Will ask. I really hope this is temporary postpartum thyroiditis however I'm not feeling pretty optimistic that it will go away eventually on its own as I've been told my antibodies are high so docs think its autoimmune. So do you think t3 would help along with t4 to stop the insomnia etc? I really hope so a I can't bear to go back onto t4 only as it makes me feel more ill :( I wanted to try NDT also but gp won't even let you say the word never mind prescribe and already found out my endo today doesn't prescribe it. Surely he has to point me in the right direction if it is needed as I've no idea how to use or where to get it from.

  • If you decide you want to try NDT this forum can advise you how to go about that. A post seeking suppliers will prompt private messages with information (we're not allowed to post suppliers on the forum, for obvious reasons).

    If your Endo doesn't want to trial you on T3 even when you insist (use of T3 is perfectly permissible even in Britain) then, again, the forum can advise you where to get it and how you might develop a dosing regime with it that suits you.

  • Thank you. Will see what the endo says if he will prescribe t3 if not will set up a new post to see where I could get t3/NDT from

  • There is a good possibility, pregnancy and new mum, that you are possibly low on all minerals and vitamins that are needed to produce T4 and convert it such as iron, iodine, zinc, magnesium. Perhaps to start taking some good postnatal multi vitamins if you are not already doing so. Once these levels are boosted your thyroid will be happy and you'll begin to feel better.

  • Hi just thought id post a quick update after seeing the endo yesterday, he's prescribed me t3 10 mcg and 50mcg levothyroxine let's hope this combo works as I had a terrible time on Levo only.

  • I've never been on levo so I can't comment on that,my endo put me straight on to T3 only,all my tests were bottom of the range,l have an RT3 problem.He started me very slowly in case of palpitations etc. and built up to 20mcg Thybon(German brand of liothyronine).Within a fortnight I could walk up the stairs in the house without having to take a break.From what I 've read T3 acts far quicker than T4 as it doesn't have to go through the whole coversion process,which I gather can be a problem for some people.No harm in asking him.My endo here in Ireland is a leading light in this whole area,he has lectured all over the world.Unfortunately Irish doctors seem to have a difficulty with listening to their own!He,s one in a million, he has been my lifeline,I have ME two and a half years and I was just told to rest,no cure.With attitudes like that we,ll never have cures for many things.According to him our thyroid gland is probably the most important gland,with adrenal glands,in our bodies.When they are not functioning well,there is a domino effect to many other parts.

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