Always take Levo on an empty stomach an hour away from food or caffeine containing drinks & other meds. Many people find taking it at bedtime works well for them.
There's really only levo, T3 and NDT. I see you've tried NDT before. Have you tried a Levo + T3 combination?
Are you supplementing vitamin levels to optimal?
Whatare your latest vitamin results?
We need OPTIMAL levels of ferritin, folate, B12 & D3 for our thyroid hormone to work well.
Levo won't 'work' for you unless you take enough of it. And with those results you are obviously not taking enough. The TSH should come down to 1 or under, so you still have a long way to go. And your FT4 is below range, so not surprising you don't feel good.
are there any new / alternative medications out there either privately or via NHS that I could suggest trying please ?
Alternative? Depends what you mean by alternative. But you can only replace a hormone with a hormone, and levo is the thyroid hormone T4. So, it's not a medication in the normal sense of that word. Therefore, it would be difficult to develop anything new.
The other forms of thyroid hormone replacement are NDT (Natural Dessicated Thyroid), made from pig thyroid, and synthetic T3. But it's far too early in your journey to know if you need those or not.
My current dose of Levo is low - but Levo makes me feel unwell and causes significant weight gain and generally makes me feel unwell.
My GP surgery have been really inefficient and unhelpful for a long time, I should have moved to a different practice in hindsight- I may well have to do.
My repeat cortisol blood test was within normal range ( high end but normal ) am awaiting urine cortisol results still but if those are normal I think GP will dismiss that there’s a problem there
I do feel pretty rubbish and have done for a long time - will get replying to previous posts
He isn't able to prescribe T3 or NDT. You have to go through an endo for the initial prescription. But not all endos are created equal! You would need to find one that is T3/NDT-friendly.
Have you ever been on a higher dose of levo? Or always stuck to 25 mcg? As I said above, that's not going to do much for you, and is probably making you worse because you are still very hypo on that dose.
When supplementing nutrients, you also need to take their co-factors for them to do any good. So, with vit D3, you would need to also take vit K2-MK7 and magnesium.
Folic acid is poorly absorbed, you'd probably be better off with methylfolate. But just taking one isolated B vit is not going to help much because they all work together and need to be kept balanced. So, you'd be better off with a B complex containing methfolate rather than folic acid.
I was taking between 125 to 175mg for many years of Levo but I never felt any benefit from it, weight gain was horrific too. GP reduced it to 25mg about 5 years ago and I honestly couldn’t notice the reduction in how I was feeling but my weight loss was significant.
Is there a list or directory anywhere to look for T3 / NDT friendly endocrinologists ? I am based in Birmingham UK
I didn’t I assumed it was high as most likely to be hashimotos. I was trying to see if gp would refer me or offer an alternative to levo but I gave up as they just don’t understand and I find it hard to explain
My recent Crp ( last week ) was normal but my ESR was high
I assume the reduction is to do with diabetes medication which I started in 2021.
My health is a mess I need to get it sorted but I find it all a bit overwhelming too. My TSH / T4 indicate that I need more Levo but I really don’t want to take it - I feel so much worse on it .
But your TSH was 8 and your FT3 and FT4 woeful. Meaning that wasn’t enough—and not enough by quite a margin. You were very undermedicated at that point. No wonder it wasn’t making you feel any better.
And the reaction was to take you off levothyroxine?
I know it’s crazy. I need to fight my case better I feel very overwhelmed with it all at the moment! I need to make a start at getting me sorted out xx
These results are 5 years old and not really currently relevant. Recommend buying a new test to include an iron panel.
Your ferritin isn't terrible but then again it could use with a boost.
Ferritin should be around 90 - 100 for best use of thyroid hormone. Suggest increasing iron rich foods in diet and eating them often. Chicken livers, pate, red meat etc
Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. Most people need a minimum of 3,000iu per day.grassrootshealth.net/projec...
Hi I couldn’t anyone who could prescribe t3 or ndt and have never heard of a Liquid T4.
Gp said they were able to manage my under active thyroid with Levo and that there was no alternative medication - they refused to refer me to endo as said it was not necessary
I'm so sorry - mind you I was refused any treatment option other than T4 tablets -
though I was able to take T4 and see a blood test reflecting high levels of T4 -
but I wasn't converting it into T3 - and without a thyroid - post RAI thyroid ablation -
and now I self medicate, buying my own thyroid hormone replacement and do not see the doctor.
Have any stomach issues been ruled out and there are no gut/stomach issues - as it seems you are not absorbing the tablets, and why I suggested trialling the liquid T4 option.
Can you see a different doctor - have you been seen by endocrinology -
you have a thyroid Auto Immune Disease called Hashimoto's -
ultimately your thyroid becomes less and less productive and you will be needing a full spectrum thyroid hormone replacement which will include some T3 alongside T4 -
or take T3 only - only available in tablet form -
or take Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and is derived from pig thyroids, dried and ground down into a powder and then made up into tablets/grains - or suspended in a capsule for those also dealing with stomach issues, bloating and sensitivities.
Thyroid UK - the charity who supports this patient to patient open form hold a list of recommended thyroid specialists and endocrinologists NHS and Private - maybe email admin @ thyroiduk.org for this list and start thinking about what to do next if the NHS is unable to help you.
Your primary care doctor can only prescribe T4 - and likely needs permission to prescribe liquid T4 as it is more expensive.
You need to see an NHS endocrinologist for any other treatment option on the NHS :
If you can afford to go privately - there are medical professionals who can help you.
You might like to read around Hashimoto's - as healing the gut - checking for other AI diseases and certain food stuffs such as gluten, dairy, wheat - and all the co-factors surrounding this AI disease may help you get a better understanding of what's going on.
thank you so much for your message and info. If you are able to private message me with where you obtain your medication from that would be helpful as to be honest I can see me ending up having to do this,
I will check out the info you have provided - I saw an endo about 15 years ago who diagnosed me with PCOS but my thyroid appeared to be ok at that time so he didn’t really look at that. I ve asked several times for referrals but gp has always refused saying not necessary as they are managing via blood tests. I am asking again and if refused will try and arrange a private consultation
I do not have any stomach / gut issues that I am aware of xx
OK then - if you wish, as well as getting the Thyroid UK list from admin - you could start another post simply asking - Who do forum members recommend I should go and see - and maybe state whereabouts you are if wanting face to face / video consult etc:
this post will be closed down to replies - as on this ' open ' part of the forum we are not allowed to talk openly about any medical professional -
but we do have a Private Message option where 1 to 1 messages can be exchanged and your Chat button lights up - it's alongside the Alert icon and looks like a paper plane - when someone sends you a PM message :
Have you considered writing to the practice manager, explaining that your doctor has repeatedly refused to refer you to an endocrinologist despite being unable to manage your hypothyroidism. And this is very detrimental to your physical and mental well being.
Hi, I see diet has been mentioned to you. And you have rather a lot on your plate with meds doseage as it is
But i need to stress that everyones thyroid tissue is very like gluten protein. Which means that if you eat gluten the undigested gluten protein (nobody can digest fully - just the way it is) then your intestinal membrane will become leaky and gluten proteins will get through into your blood stream. This will cause an immune response where the immune system sees these gluten proteins as the enemy and attacks. Unfortunately the immune system will also attack the thyroid tissue as so similar
Answer - remove glute from your diet
Infact anyone with an autoimmune condition needs to remove gluten from their diet
Gluten creates a leaky gut (over large undigested food proteins get through. Anything that you have just eaten. Anything , Tomatoes, rice , dairy , anything)
Dr Datis Kharrazian (see youtube books by - why is my thyroid still not working, why is my brain still not working) He has a list of food stuffs correlating with tissues of different organs mainly the brain. Have a leaky gut wall and say you eat a tomato then large undigest tomatoes will get through into blood stream. Immune system will attack and also attack similar tissue in the brain or other organs
You have to get rid of leaky gut so first job , no gluten. Clean your diet up. You can get rid of diabetes 2 by not eating carbs so other flours and sugars. Google the Public Health Collaboration . Hold conferences in the UK. Members British GPs, Health clinicians, scientists. You can listen to past conference speakers from their website also you tube. Founded by Liverpool GP, Dr David Unwin
So learn and cut the carbs including sugar
Eat fat instead - Fat does not make you fat!! Carbs make you fat. The liver converts sugars and refined carbs into fat and lays it down as extra weight. Because the liver can only store a tiny amount of sugar. All flours from grains are digested straight into the blood stream and insulin has to be created to remove the sugar and takes it to the liver where it is converted to fat to store.
So 2 reasons to stop eating gluten. To get rid of type 2 diabetes without meds. And to stop your immune system attacking your thyroid
This will help the good organisms in your microbiome to thrive and bad ones to withdraw into a tiny population
So you must stop eating refined carbs and starchy carbs which will rebalance your microbiome
Its a start to a path of better health.
Just one clause. Dont jump onto the gluten free commercial products as they are full of sugar and not healthy. And watch what you drink. Water is best& tea coffee& herbal teas.
Canned / bottled drinks and fruit juices are the worst thing you could drink. No one would ever eat 22 oranges in one sitting but you do with fruit juices
Eggs for breakfast you need the choline they contain. And Never eat cereals
Sort your intestinal lining out so get rid of leaky gut and so the food you eat which will sort your micro organisms out in your microbiome
And get your vit D level up to 150 mmo/L I take natures answer liquid D3 drops . You can then take 5 drpos a day = 10,000 iu to get up quickly . And take separate K2 drops. You have to take K2 . Everyone needs to take K2. To get an understanding of see Kate Rheume Bleue's book - The little known vitamin that may save your life, or may find info lecture on you tube. Excellent book . vit D is not just about bones and teeth, it supports the immune system and all organs
Then you only have to worry about the Levo T3 &T4 x
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