Diagnosed in September 2016 with Hypothyroidism later discovered to be as a result of Hashimoto's Thyroiditis.
Also diagnosed Coeliac in March 2017.
Since Hypothyroidism diagnosis I've been on 100mcg Levothyroxine and still feel terrible! Can't get hold of T3 Treatment on NHS despite Endocrinologist's request that I be trialled on it. Feeling frustrated but also still hopeful that one day I will feel better!
Here to learn, support and connect with people in similar situations xx ❤️❤️❤️
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Pamela0106
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Hello Pamela, welcome to the forum. sorry to hear re your thyroid . Make sure you are taking enough vitamin D and B12, that and giving up gluten really helped me. I've never taken T3 so cannot comment on that but I do hope that you will start to recover. I am sure you will find some great advice on this site to help you on the road to recovery and remission of your symptoms.
Thank you for the warm welcome hun. My B12 is extreme low end of normal range but still in range. I take a B-Complex though anyways. My Vit D is very low from last test so I'm also taking a supplement for that too. And of course, I'm Coeliac, so I am gluten free already xx
Determined to find the root cause! One day! And soon! Xx ❤️
It's B Complex with added Vit C. I seem to be carrying way too much Riboflavin (B2) though so I think I might just change it and stick to a B12 only one maybe. X
If you are low in range for B12 you should take B12 to get it past 500. But take the methylcobalamin type of B12. Folk on here also advise taking B complex to keep the B vits in balance.
You have the autoimmune version of thyroid disease, plus Coeliac, which is also an autoimmune disease. Giving up gluten helps many people. The Paleo Autoimmune Protocol (AIP) is a lifestyle programme aimed at reducing autoimmunity and inflammation. There are lots of great websites with information about this: Phoenixhelix.com, Paleo Mom, Autoimmune Wellness, to name but a few. I have been following this programme since last year and am feeling much better.
Regarding not being able to get T3 on the NHS, there was a post here the other day about what to do in these circumstances, as Commissioning Groups are not allowed to deny treatment which has been recommended by a doctor, who could be sued for malpractice. Hopefully someone else will pick up on this one and advise you. You could consider self-medicating. I have sent you a private message regarding obtaining NDT, which I take.
Thank you for the welcome and advice. I'm pretty clued up on Auto-Immune Disease what with having 2 of them and AIP too. I'm already GF what with being Coeliac but have been working towards full AIP and will get there very soon.
On the T3 front I can get it privately but my plight is to stop the withdrawal from the NHS. I'd rather not self medicate if I can avoid it. I believe the NHS owe it to patients to prescribe it if it is needed and to find a big Pharma that isn't charging them the earth for it.
Welcome to the forum. Can you add your latest results and the ranges, important as they differ from lab to lab. We may spot something that could help you.
I have "Subclinical Hyperthyroidism" at the moment. TSH dropped from 62.4 to 0.03 on last test but FT4 and T3 are in range. Not optimal though and I am fighting a losing battle with the NHS GP to have them test Free T3 .... they just won't do it. Private tests show I don't convert to the active form of Free T4 though. My dosage remains at 100mcg Levo but my private endo wishes to trial me for 2 months with reduced Levo to 50/75mcg on alternate days with 10mcg T3. X
Within days of taking t3 I felt human again. I live in Scotland and my request for it was approved by my endo. Push for it it, you deserve a trial at least.
28 x 20mcg Mercury Pharma Liothyronine will cost £258+ If you get a private prescription it will be cheaper to buy Thybon 20mcg via versandapo.de/en/0/7498960/...
Thank you. I will bare that in mind for sure. Hoping NHS will support my Endocrinologist's request even though I'm having to put up a bit of a fight for it x
26. Do not post information about specific endocrinologists or doctors on the main board without their permission as this may result in unwanted attention from certain areas of the medical profession. If you wish to discuss a particular endocrinologist or doctor, you may mention his/her name and location, providing that you ask for comments by private message only.
Hi Pamela, I am 41 and was diagnosed with hypothyroidism in my mid twenties and been on 200mcg and have always felt pretty rubbish. Over the last 5 years my health has rapidly declined and I have had numerous blood tests, an MRI scan etc, etc and basically told I was depressed and it was all in my head!! Despite having several falls because my legs kept giving way, numbness and pins and needles in my hands and feet amongst other things. My B12 levels were extremely low but in range, so this was not investigated until I pointed out to my GP that my symptoms were consistent with having a B12 deficiency. I am now on B12 injections every 10 weeks (for last 6 months) plus I started a gluten free diet 2 months ago after being advised by a private endocrinologist that my B12 levels should be maintained at around 600 and being gluten free may help. I am now at long last starting to feel like a human being!! So it may be worth looking into the B12 also. Good Luck xx
Thank you Zoe. My B12 is in range too but at the low end. It's in by 7 points according to my GP's range. I take a B-Complex but I seem to be taking on too much Riboflavin (B2) with it so I think I'm going to change to just a B12 supplement.
My doctor wouldn't entertain B12 as a possible reason for me feeling this way because it was in range unfortunately.
I'm in process of having to change doc's though due to change of address so maybe the new one will discuss that with me. Xxx
Yes, definitely keep pushing. Mine was in range by 8 points I think and has been for years (I requested copies of my blood results going back at least 5 years). My doctor wouldn't entertain it either, despite all the symptoms, and only listened once I had seen the private endocrinologist. The annoying thing is it has now left me with some permanent neurological damage I also think I would benefit from T3 as I know I also do not convert to active Free T4 (Shown through private tests) and my TSH is around 0.02, so my GP keeps trying to lower my dose of T4! But I keep pointing out that my TSH has always been that low and the other results are in range, but not sure how long I can hold him off!! If you do get any joy with the T3 I would be interested to know. Hope the new doctor is more helpful xxx
I have already managed to source a private Endocrinologist who is willing to prescribe it to me (but at cost). I am going to take him up on it but I had to try and push with the NHS first. If you're anywhere near Edinburgh I can PM you the name of the Endo I seen. X
Did you sign the petition yet to stop withdrawal of T3? Feel free to and share share share ....
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I also think I would benefit from T3 as I know I also do not convert to active Free T4 (Shown through private tests) and my TSH is around 0.02, so my GP keeps trying to lower my dose of T4! But I keep pointing out that my TSH has always been that low and the other results are in range, but not sure how long I can hold him off!! If you do get any joy with the T3 I would be interested to know. Hope the new doctor is more helpful xxx
My introduction re Thyroid tests April. 2024
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