So I’m a mess right now and totally confused. I finally got back to my endo to discuss my list of symptoms and to ask to trial T3 because of my poor conversion. His response was to draw me a picture of how my thyroid worked, which I found rather condescending and insulting. He explained I did not need to be gluten free or dairy free, and that I def did not need t3. How could he know that? As you said he would, he told me I have turned hyper so he has to reduce my medication. He also told me that my symptoms were my new norm and basically get used to it. He will not let me do the t3 trial as he says t3 meds are blacklisted and there is no proof they help. I told him I did not want to reduce my medication and he rolled his eyes at me and told me he was letting my doctor know that my new level will be 75 / 100 rotated daily. He said he was signing me off and I did not need to return again.
He also told me not to read what’s on the internet or forums and that most people live normal lives on levothyroxine, it’s a tiny minority who don’t. I left the hospital and cried.
My doctor is no better, in fact probably worse as she just told me my weight gain was purely down to my diet and gave me a diet club number. I’m sure she thinks I’m a hypochondriac. She asked no questions about my diet or exercise regime to come to this conclusion.
I feel like I’m back to square one. I cannot afford private care. My life is miserable right now and I’m a single mum of two who needs to be well.
From now on I will work on building up my confidence to start doing this on my own. This forum has been great so thank you for the support you’ve given me. I hope you all have better experiences of the NHS than me.
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efm2022
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Yes, I take mine first thing in the morning so I didn’t take it till after my blood test.
My vits are:-
VIT d and k2 - 8000iu d3, 200ug k2
NuU VIT b complex
B12 oral spray 1200ug
Calcium, magnesium, zinc (1 pill)
Just added NutriZing 16 strain multibiotics
I weigh about 78kilos now (about 12more than I’ve ever been before)
I can ask to be retested but my doctor was rude last time and said I wasn’t allowed tests whenever I felt like it. I could always say I consider a reduction after I’ve had the blood test done again.
Last time you kindly gave me a private doctor’s details for private t3. Can I just do this myself? I’m still quite scared about going this alone.
If a patient reports persistent symptoms when switching between different levothyroxine tablet formulations, consider consistently prescribing a specific product known to be well tolerated by the patient.
If symptoms or poor control of thyroid function persist (despite adhering to a specific product), consider prescribing levothyroxine in an oral solution formulation.
Physicians should: 1) alert patients that preparations may be switched at the pharmacy; 2) encourage patients to ask to remain on the same preparation at every pharmacy refill; and 3) make sure patients understand the need to have their TSH retested and the potential for dosing readjusted every time their LT4 preparation is switched (18).
Remember to stop vitamin B complex 5-7 days before blood test as contains biotin
Many members have note added to all prescriptions saying “no Teva”
Many people find Levothyroxine brands are not interchangeable.
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Mercury Pharma make 25mcg, 50mcg and 100mcg tablets
Mercury Pharma also boxed as Eltroxin. Both often listed by company name on pharmacy database - Advanz
Accord only make 50mcg and 100mcg tablets
Accord is also boxed as Almus via Boots,
Accord doesn’t make 25mcg tablets
Many patients do NOT get on well with Teva brand of Levothyroxine. Teva is lactose free.
Teva contains mannitol as a filler instead of lactose, which seems to be possible cause of problems. Mannitol seems to upset many people, it changes gut biome
Teva is the only brand that makes 75mcg tablet.
So if avoiding Teva for 75mcg dose ask for 25mcg to add to 50mcg or just extra 50mcg tablets to cut in half
But for some people (usually if lactose intolerant, Teva is by far the best option)
Aristo (currently 100mcg only) is lactose free and mannitol free.
It's no wonder that a majority of members have had to take their own health into their own hands and avoid the 'experts' as few seem to know exactly how best to improve their patient's health.
I, for one, had severe palpitations when on levothyroxine and had over-night recordings to try to fathom out what was happening and I think the Cardiologist was puzzled. but when T3 was added to T4 I felt an improvement but it was when I stopped T4 and took T3 alone that all symptoms resolved.
The following link might be helpful and it is from a popular site in USA.
That’s great news that you have worked out the right treatment for you. I lack confidence and the knowledge to do this on my own so any help is most appreciated. I will def read the attached. Thank you x
I hope you get to your 'optimum' dose' soon. It's amazing the difference it makes when our body gets the amount of thyroid hormone replacements that makes us feel we're on the right dose.
I have met a couple of people who were prescribed T4 and they had no problems at all and felt well and also looking good. Whereas on T4 for me was an awful experience.
When we're newly diagnosed as being hypo - the majority of us haven't a clue what it means - except we feel awful (mine was consistent palpitations)
I was also very fortunate to consult with the 'last two' doctors (Dr Gordon Skinner and Dr Barry Peatfield., who (when students) were trained about clinicsl symptoms and how best to 'relieve clinical symptoms but I doubt that many GPs nowadays know any clinical symptoms.
I am now prescribed T3 and am symptom-free. I hope you will soon be free of clinical symptoms.
I'm so sorry your endo appointment was a disaster - it is not your fault - mine was too and I think it power for the course and eventually realising that you must try and be your own best advocate and if all else fails - DI for Yourself.:
Your confidence will grow as you read around on this forum and if suffering with that awful brain fog you'll likely feel nothing is registering, but it does, and you will become your own best advocate.
I don't have Hashimoto's but many forum members also follow the research of Dr Izabella Wentz - thyroidpharmacist.com
Unfortunately it is a post code lottery if you get help or not and it is not based on medical need but on financial constraints and the mis - understanding of the current NICE guidelines by the local CCG/ICB committee's who hold the purse strings.
I think my anger drove me to keep fighting the system in place back in 2018 but when I realised I knew more than the endo and my doctor put together I knew I couldn't let them keep me this ill and I started self medicating and am much improved.
I found Your Thyroid and How To Keep It Healthy a good all round easy, sometimes funny, insightful read that gave me the basics and it is written by a doctor Barry Durrant-Peatfield who has hypothyroidism and who resigned from the profession because of the constraints he found he was forced to work within.
hi efm2022: sorry to read about your endo experience and I understand how you feel, having been through much the same.
I also understand your apprehension about prescribing for yourself, and the pressures of needing to be well for your family - as well as the constraints on going private.
‘Don’t read the internet’ seems to be a mantra amongst consultants and GPs! I’ve heard it a few times.
If you feel you could manage it, what I would do in your shoes, is request a second opinion on the basis that current treatment/prescribing is ineffective and detail the symptoms you cope with, how they effect your quality of life and overall health. I agree you should refuse a reduction, and could leverage the need for a second opinion on that basis .
Present them with your symptoms - do not be fobbed off with the ‘most people’ argument - you are you - no one else . Stick to your guns that you know your own symptoms - you are not depressed, insane, or a number on a piece of paper - and you need to be treated as an individual - as politely or persuasively as you can.
Treatment, even within the NHS, is a two way contract, is negotiable and remember that you are not under obligation to agree with a medical opinion.
Thank you so much for your reply. It helps a lot to have all this support and good advice. I def agree on the second opinion too. I will wait for my blood results and then come back to this wonderful forum to plan the next step.
I’m sorry you feel so ill . It’s going to be a scary time for you if you think you are not supported by your GP and Endo. But you are supported here!! There is so much knowledge on this site.
As for medics saying don’t read the internet🙈I found this site because I read the NHS website that gives a link to ThyroidUK which sends a link to this site!! Thank goodness I found it 3 years ago I would never have learnt about the thyroid and all the issues. But after reading every day with my coffee. I feel I have the knowledge and courage to face any medic and stand my ground. You will need to advocate for yourself. And you will have all the support here
Im sorry you had to deal with this type of doctor but the worse thing you can do is go into your doctor’s office and talk about thyroid meds and weight gain … They think your a drug addict looking for a diet pill (thyroid meds). I honestly don’t know what the solution is for weight gain and thyroid problems …. It sucks bad and doctors don’t care and they don’t want you reading because you may start questioning their knowledge… keep reading.
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