I’ve had the same conversation with this man for 4 yrs. I had a TT in 2014 due to thyroid cancer. Afterwards I had 4 horrendous years on Levo (170mg)
Last yr after another refusal to try T3/T4 combination therapy; I began to self source NDT.
I read STTM and followed a protocol of NDT, bits and supplements- it changed my life!
Now, I’ve hit a bit of a wall, feeling rubbish and symptoms are creeping in. My recent bloods; (TSH 0.05 / T3 4.9 / T4 9.1) GP is worried but doesn’t know what to do - just prescribed Sertraline 🤷🏻♀️
How can I get the ENDO on board? I feel like if I was actually monitored and managed by a specialist it would help!!!!
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Kerrrie
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Do you have the ranges for your results, please. The reason being that labs have different ranges and they enable members to respond. To edit you press the 'down arrow' next to More and select edit. Labs differ in ther ranges
If we add or taking any other combination our blood tests will not correlate as they were introduced for levo (T4 for levo alone). I think they should take more notice of our clinical syptoms and aim to relieve them.
Due to you have your thyroid gland removed and then refused to have a T3/T4 combination sounds horrendous. I have my gland and I couldn't improve on levo only.
The organisation in UK have made untruthful statements about NDT in order to get it withdrawn from being prescribed. Considering that NDT (since 1892) saved thousands of lives and still does today if levo doesn't suit the patient.
One of TUK's Advisers (now deceased) wrote the following and for three years before his untimely demise he requested a response. They just ignored his request:-
Also EXTREMELY important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common. When were vitamin levels last tested?
What vitamin supplements do you currently take
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .
If/when on NDT make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test
Is this how you do your tests?
Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins
Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random
Why on earth has your GP prescribed setraline? He might not know what to do, but handing out stuff like that as if it’s a tube of smarties isn’t going to help!
The best way to get an endo on board may be to ditch Dr No (love that moniker!) and find one with an open mind who wants to help you get well.
Having had a TT you deserve to be offered a full range of possible treatments by someone who knows how to help you get better. It’s a disgrace you haven’t been offered T3 - I might have hashis and a shrivelled thyroid, but at least there’s a chance it may push out some hormone to help me at times. You have nothing.
I’m sure I’ve read on here before that after thyroid cancer your TSH needs to be suppressed and your results certainly look like you could tolerate an increase in meds. I’ll leave that to the wiser on here than me to advise though. 🤸🏿♀️🥛
I read you had a TT in 2014, and are planning to revisit the same endo who, for 4 years has been refusing you a trail of T3 along with your T4.
It seems to me endos and doctors work to guidelines and if they are in a CCG that is refusing new prescriptions of T3, let alone reducing established patients prescriptions of T3 and swopping them onto T4, you'll be causing yourself unnecessary grief and upset.
It seems to me that none of these decisions are made in the patients best interests and are simply financial restraint within the NHS system and prescribing an anti depressant is not the answer, as you need complete thyroid hormone replacement to address the chemical imbalance within that is making you ill.
Most doctors and endos are intransient, they are paid to follow the guidelines and doubt many will put their heads above the parapet and stand up, against the CCGs and their employers, jeopardising their own positions and risk disciplinary action.
I believe there is a list of " friendly endos " held by Thyroid uk. and this might necessitate you going private, as then, you can be prescribed and managed on either T3 / T4 or NDT, but of course this all comes at a cost which ordinary people may find difficult to maintain.
Many people on this website have resorted to treating themselves and buying their own thyroid hormone replacements, and you can receive details of " safe sites " by private messages, should you wish.
A fully functioning working thyroid would be supporting you on a daily basis with approximately 100 T4 + 10 T3. T3 is said to be about 4 times more powerful than T4.
T4 is a prohormone and your body needs to convert the T4 into T3, which is the active hormone and that which your body runs on, and I read most people need about 50 T3 daily in order to function.
Your own ability to convert the T4 into T3 can be compromised if your ferritin, folate, vitamin D and B12 are not optimal within the ranges, and these vitamins and minerals need to be supplemented if low, for any thyroid hormone to work effectively.
I just think it makes sense to replace like with like, and that if there has been a medical intervention and the thyroid either surgically removed or ablated with RAI , the patients prescription should have both T3 and T4 available, for if, and probably when, required.
Some people can get by on T4 alone, some people simply stop converting T4 into T3 at some point in time, and some people simply need both these vital hormones dosed and monitored independently to bring these essential hormones into balance and thereby giving the patient an acceptable level of wellness.
Realistically, if only dosed on Levothyroxine, you have automatically " lost " your own thyroid production of " that little 10 T3 " but that actually represents approximately 20% of your daily production, so, put another way you have effectively been down regulated by a 1/5th of your potential well being and health, and this will, of course, create knock on problems down the line.
The thyroid is a major gland responsible for full body synchronisation, your physical, mental, emotional, psychological and spiritual well being. your inner central heating system and your metabolism.
Your Thyroid and How To Keep It Healthy is an excellent, common sense book written by a doctor who has hypothyroidism himself. We may now not have this major little gland but we do need to know all that it does so that we can try and compensate for it's loss.
Dosing on NDT will not produce blood tests that many doctors understand.
NDT was the only treatment for hypothyroidism for over 100 years, prior to the introduction of Levothyroxine, along with the blood tests and ranges of the 1960's.
On NDT we dose to the relief of symptoms, which initially seemed to go well for you.
Maybe your vitamin and minerals need looking at ?
Have you changed brands of NDT - adjusted your dose ? What are you currently taking ?
Without more information it's all a bit like guess work :
Wow that is the most help and advice I’ve received!! Makes so much sense and has given me a lot of insight and perspective!!
So, I started on Nature-Thyroid in Oct 2018 slowly came off T4 (Levo) and increased the NdT for the full switch over the course of 6weeks it so.
From starting the NDT I’ve also taken an array of vits and minerals.
I’m prescribed calcium due to damage caused during TT.
I also take - B12 / selenium / Magnisium Glycerate / zink / Biotin / Senna every night.
I had gastric sleeve surgery in 2017 so I have a multi vitamin daily.
The irony is; the issue with. It prescribing T3 or NDT options on NHS is funding...they failed to diagnose me correctly and have spent an absolute fortune medications / surgery etc for the “symptoms” of thyroid disease!
I was diagnosed with PcOS as a teenager as I never menstruated, weight gain fatigue etc I had years numerous gynaecological procedures and treatments followed by a failed cycle of IVF. (I actually think this was a thyroid problem from the very beginning..... anyway!!
I struggled through Uni and as a professional become consumed by poor health - Heart palpitations, tremors, hot/cold extremities, insomnia followed by episodes of chronic fatigue (literally pulling my car over to lay-by and sleeping!!) mood swings / aches / pains and more weight gain lead to me being diagnosed with anxiety and depression and along side the prescriptions for this I was given metformin for the endocrine issues.
I have managed to continue to work full time throughout my illness.
In 2013 this year I lost a lot of weight with no explanation my hair fell out and my body went in to complete hibernation. GP diagnosed ME & Fibromyalgia (I challenged the diagnosis was referred to rheumatologist who confirmed diagnosis I was livid!!!
Anyway I was LUCKY to have fallen and broken my ankle in March 2014!
I was taken to hospital and drs assessed I needed surgery to pin the bone. I was admitted given morphine and went off to sleep. I was woke
At 3am by the nurse and on call registrar and asked if I had been out the bed? (With a leg in traction??) My heart rate was ridiculously fast with no exploration!
They ran an ecg and there was suddenly a big concern I was referred to cardiology and the anaesthetist refused to accept me for surgery - after some investigations - they discovered my Thyroid function was off the scale in the middle of a thyroid storm!
I had urgent referral to a endo and further scans and tests showed I had the “C” and needed a full TT I was operated on in August.
Since then T4 took away my life! Zero energy, poor mobility, empty head - living off codine!!
They throw diazepam and sertraline at me and tell me it is my mental health which is causing me to feel low, upset, tired, frustrated!?!! I almost start to believe them!!
Im a freezing cold miserable old lady (only 39)
DR referred me for weight loss surgery due to having more than one comorbidity a high BMI and the complications of thyroid / pcos etc with weight gain and inability to lose weight effectively. I had a gastric sleeve in 2017
I’ve lost 7 stone so far and this coupled with the change to NDT has been life changing literally.
I managed to walk Snowdon in February!!! I have had an amazing amount of energy no naps no pain and felt really good a until recently when I’ve hit a wall. I’m so worried I don’t want to go back to those dark days, bed ridden and just existing.
Pennyannie you sparked something - you asked if I changed brand, well I used nature thyroid from October 2018 to August 2019 this last batch I had was WP thyroid both from RCLabs but they didn’t have the nature thyroid when I ordered in Aug! I’ve just ordered nature thyroid again. I’m hoping that’s what it is??!!
Had ferritin calcium and folate tested in April this TT all in “range”
Do you think I am need to increase my dose? Could I be Hypo?
I only asked !!!! Seriously, I'm just trying to take this all in.
OK, I'm just someone, with dyslexia, who has had to become her own doctor at age 72.
Diagnosed with Graves Disease in 2003 and then given Radioactive Iodine treatment in 2005 I am having to manage Graves, thyroid eye disease and hypothyroidism.
I became very unwell some 6 years ago, but have had no answers, understanding or help with my ever decreasing circle of wellness. I believe I have been suffering from the long term consequences of drinking this RAI and when refused a trial of T3 last year, started to self medicate with NDT, purchasing my own thyroid hormones and am greatly improved doing it for myself.
So it's been a challenge but when you become sofa bound, you have the time, if you can find the brain power, which, is still limited on some days, but much improved.
I have learnt so much from this amazing website but my knowledge is mostly Graves and thyroid related. I'm not in a position to fully reply to all that you have written.
I would imagine that yes, you are hypothyroid as you haven't a thyroid of your own.
Did you ever have a diagnosis of why they removed your thyroid, was it Graves Disease ?
Graves is an autoimmune disease, and as such, it's for life, removing the thyroid gland doesn't actually solve the underlaying problem which is one of your own immune system mistakenly attacking, rather than defending, your own body.
Reading back your previous post you did seem to feel " so much better " some months ago, so yes, maybe the change in brand of medication maybe a " light bulb moment " .
If you follow through on this thought, your metabolism and wellness will have started to unravel as you've fallen back down the rabbit hole. This in turn will have had a negative effect on your vitamins and minerals compounding the problem.
Nhs ranges are for well people, and we need our vitamins and minerals optimal.
" In the range " isn't ok for us, we need optimal results to be as well as we possibly can ever be.
Maybe do another post asking about the brand you switched to - someone might be able to confirm your suspicions - I know many people on here self medicate and buy from abroad, either, or, Natural Desiccated Thyroid and T3 hormones, but they probably will not pick up this post and find you here, pondering the efficacy of your recent purchase.
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