Hi I was diagnosed with Hashis a year ago when my TSH was 79. I became very unwell when I started on Levo and was off sick for 4 months. I then improved somewhat and even managed to do some pretty heavy physical gardening over the summer. However as soon as the weather turned colder my symptoms slowly returned, including a scalloped tongue. I saw Endo again in December, my TSH had been increasing and was 2.68 and T4 16. He agreed to raise my Levo to 150mcg from 125mcg. (This was after I showed him the Pulse article Louise had kindly sent me). I asked him about T3, he said I knew you were going to ask about it and told me current thinking is moving further away from T3 and the medical profession don't prescribe it!!!
I have been thinking about the past year and although I am much better I still tire easily, often I have to go to bed as soon as I get home from work as I feel so exhausted as if my batteries have run out. I rarely go out in the evenings as I am too tired so my social life is practically zero. When I take annual leave I use my time off to rest and try and recover when I used to do things like days out, decorating visiting friends etc. I just feel like I am living half a life. I also have brain fog and it has taken me a year to read one paperback book when I used to read one in a week - just lose concentration.
I take sublingual B 12, vit d spray and iron supplements.
GP recently found blood in my urine samples on 3 occasions and I underwent a bladder investigation and kidney ultrasound scan which came back clear.
I would be grateful for any advice on what I can do next to get my life back. I am considering sourcing some T3 but a bit unsure.
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Sue777
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The Endocrinologist is not truthful regarding the addition of T3 or T3 alone as some do prescribe.
It is probably that he just doesn't want to although the BTA guidelines state it isn't helpful. Not according to the patients who take it and have an improvement and are well. My NHS endo did give me T3 to add to T4.
I think you should source it yourself but any information would be by private message as no information can be posted on the forum, in accordance with the guidelines.
I am now on T3 only and am well. Everyone is different and sometimes we have to try several alternatives.
Sue, T4+T3 combination made a huge difference to me. I think it's worth a go but there seem to be stock issues until the end of Jan in several of the online pharmacies.
I do think it would be helpful if you could have the FT3 tested along with the FT4. It is possible that your T4 tablet is not converting into the ACTIVE thyroid hormone T3. This is needed in almost every cell in the body. When T3 is low then things begin to go wrong. Am sure you know this as you have asked for T3.
When I was not progressing I did a spread sheet of all my thyroid blood tests for the GP which clearly indicated my T3 was consistently LOW and so I combined both T4 and T3 for some time. Now T3 only.
Do you have gut issues ? absorption ? Have you considered going gluten free ? I have Hashimotos ( 9 years ) and Crohns ( over 40 years ) and have only recently gone GF - the results are encouraging
How long ago did you increase your dose and have you been retested if it's been longer than 6 weeks? I'm just wondering if you have been on it long enough to make a difference. As Marz says you also need an FT3 reading to see if you are converting properly. Thyroid sufferers tend to be low in vitamins and minerals and these need to be optimum to aid absorption so they may well be needed to help with some extra T3. t3 is prescribed but it's a struggle and I suspect it's mostly down to the cost in the UK added to the many GP's who don't understand the physiology behind it all. vits and Mins also help with some of the symptoms so that may well be a helpful next step.
It is a terrible indictment on the health system but I found that by seeing an Endo privately, whom I knew did prescribe T3, I managed to obtain my first prescription very easily and after that I asked my GP if the practice would take over prescribing and it has. I now have a repeat prescription. Louise Warvill has a list of Endos and you just need to find one willing to prescribe. They are not so rare when you are paying heavily for their pen work!
Do you have to pay for a private scrip to get T3, Hennerton? That's outrageous if I read your mention of 'paying heavily for their pen work' aright.
The cost of T3 in this country is outrageous too. No wonder docs are chary of prescribing it. From figures I've seen recently it appears to cost 10 times here what it costs to import from, say, Turkey. That is a scandal on its own. And no scrip needed.
I paid a fee to the Endo which covered his private prescription and then asked my GP to prescribe the same dose for me for all subsequent prescriptions. I only went to see the Endo a few times, as he was utterly useless but at least I got my first T3 prescription...
Can anyone recommend a endo in Devon? Been searching willing to go private , and sort me out finally. Internal shakes since Oct 2013 and still nothing done driving me insane! Thanks in advance please pm me if easier
Flo, post your request in a new question as it will be missed by a lot of people in this thread. Email louise.warvill@thyroiduk.org.uk to see if there are any NHS and private endos in Devon recommended by members.
It took over 12 weeks for an increase from 100 to 125 mcg of levo to have an effect on me. It could be that you need a little more time - when it finally kicked in I felt significantly better. But although I felt better I still had unacceptable symptoms and my T3 had barely risen at all.
Is that really true, that few of us can led an energetic life? Oh dear I was relying on the fact that after I recovered from my op and got the medication levels right I would be back to normal. Quite depressing if not.
I take it you are having a Thyroid op, if not you maybe one of the lucky ones like me, once on the right dose of meds. I attend 3 fitness classes every week and aim to keep it up as it makes me feel really well and more energetic. Not bad for a 68 year old.
Thank you for all your replies. I am due another blood test in February so as some of you have advised I will wait until then to see if my symptoms have improved. x
I suggest you have Vit b12 & d ,folate ,iron,ferritin levels.If b12 is below 500 you need injection suppliment.The brain fog fatigue is all related.Google Sally Pacholok's book Could it be B12.? I was taking thyroxine too for 13 yrs when suddenly I was thyroxtoxic .Ceased it nearly 2 yrs ago & levels since have always been in so called norm range.My B12 was 290 now with diagnosis of B12 def & supplementing injections weekly now 1400.
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