I'm 60 and have been on 100/125mg Levo for over 30 years. For the last two years following a serious accident and total knee replacement, I've had severe fatigue, massive weight gain, swollen legs/arms and breathlessness. Endocrinologist just says my body is 'in trauma' and prescribed anti-depressants (Sertraline) - even though I told him I did not feel unhappy. That made me put on 2 further stones which really did depress me. I've gone from 125lb to 160lb - from a size 8 to a size 16 - without changing diet/exercise levels. I quickly came off the tablets but cannot lose the weight.
I wake up every day feeling shattered - not wanting to get out of bed. I can't be bothered with housework, have no interest in going out, and cannot wait to crawl back to bed for my afternoon nap. I'm often back in bed for the night by 7 pm. I eat super-healthily, limit alcohol and go to the gym when I can, but cannot lose an ounce. My joints and muscles scream in pain when I move. Also the brain fog and memory loss are still there.
I would at least like to try T3 (in spite of the current plans to withdraw it) as I am prepared to fund it myself. How can I get access to a sympathetic Endocrinologist who will allow me to try this?
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hugbubble
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First step is to get FULL Thyroid and vitamin testing privately
For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also extremely important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, especially if Thyroid antibodies are raised
Common for thyroid levels to become unstable after menopause, but also after general anaesthetic. Frequently low B12 after operation
Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting.This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)
Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).
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
Medichecks currently have an offer on until end of May - 20% off
Great, info, thanks. No my blood tests at the GPs are not taken like this - just randomly. I am due blood test at GPs next week (will fast beforehand and not take Levo until afterwards) and will request that these extra tests are done. I am in Manchester. Will check out the private testing website and email Dionne for list of practitioners.
If you are prepared to fund your T3 why do you need supervision on how to take it. ?
You know your body better than anybody else, and this amazing site will talk you through.
I was refused a trial of T3 by the NHS because of my suppressed TSH - I'm with Graves and post RAI 2005. I decided last year to trial the other thyroid hormone options, so purchased the T3 and Natural Desiccated Thyroid supplements myself.
Both worked and alleviated many mental and cognitive functions.
I have settled on NDT, still with " L " plates on but now going out of the cul de sac and onto the main road back to better health.
You will need to provide the necessary blood tests as detailed on this amazing site, if your doctor doesn't play ball, there are options available on here, and vitamins and minerals need to be optimal for thyroid hormone to be fully utilised.
Hi - thanks for your response. I have access to low cost T3 as I have a home in Turkey, but I needed guidance on how much to take - I'm aware you cannot just substitute one for another. I read that you need about one third of the amount of T3 as T4, but am also aware that T4 has a longer half life than T3 so may be over-dosing for some time. Would like to avoid this due to damage to bone health. I already have osteopenia (probably caused by years on Levo) and over the past 10 years have broken nearly every bone in my body. I didn't want to 'experiment' on my own - I was looking for some professional guidance.
I understand that you would like some professional help to trial T3.
I think we all would but if you get nowhere with your doctor a private endocrinologist might be the answer for you.
You can simply explain that you have the T3 and you can pay him to monitor your progress on a trial of T3 and T4.
The only other alternative is to DIY with the help of this amazing site.
I read most people seem comfortable on a 1/4 ratio : T3 being about 4 times stronger. When I trialled T3 this site suggested I drop 25mcg T4 and add 6.25 mcg T3 and it worked. I went on to overdose, but that's another story, and my learning curve about my own body's requirements.
Out of curiosity, after your serious accident, or any time since, have you ever been prescribed an antibiotic?
Yes, I was on intravenous antibiotics for days during my 10 day stay in hospital. The accident has thrown my whole body out of kilter and I have gastric problems, ENT issues, UTIs. Strep B infection - so yes have been prescribed several antibiotics since then.
Speaker 18. Neal L Millar, Institute of Infection, Immunity and Inflammation, University of Glasgow, UK (an academic orthopaedic surgeon based at The university of Glasgow , Scotland and an international expert on tendon injuries and the basic science of tendinopathy.)
Speaker 5. Miriam Knight, Quinolone Toxicity Support UK --------
Hugbubble, you can email Dionne at ThyroidUK to get a list of doctors members have had success with. If you pay privately for T3 the cost will be astronomical. I am not fully up to date with the cost of a prescription packet of T3 in the UK, but it skyrocketed in recent years, so will probably be several hundred pounds per month, plus the doctor's fee.
Many of us here buy our own from abroad, where it costs a few pounds per pack, and monitor ourselves. It's possible to get started off with a doctor, and then go on to self medicate by yourself. You may have to see a couple of different doctors before you find one that suits you.
My suggestion would be to learn how to monitor your own health first. Go to Medichecks or Bluehorizon and buy their comprehensive thyroid test package, including TSH, freeT4, freeT3, thyroid antibodies, Vit B12, Vit D, ferritin and folate. You can get this as a home finger prick test or pay for phlebotomy. Then read the forum for a few months until you are able to read your own blood tests, and have a good understanding of how to tune your dose and add T3.
At that point you'll be a knowledgeable patient, and will be able to evaluate whether doctors are helping you, or decide if you want to self medicate. If money isn't an object and you're in a position to spend a few thousand and travel around the country to a handful of private doctors, then it's less important to educate yourself. But unfortunately even the recommended doctors can be a mixed bag, and you can easily waste a long time not being helped.
That's great, thanks. I have a home in Turkey - I travel there 5 times a year - and there are at least 5 pharmacies in my village, so I can get the low price T3 from there. As you say, I just wanted someone to guide my through the dosage, as I'm aware that over-use of such drugs can lead to bone quality damage. I already have osteopenia after being on Levo for 30 years. In 5 years I have broken both legs, both knees, both wrists, one ankle, and one arm. I am due a blood test via the GP Practice Nurse next week, and will see if she will test for the things you recommend. I have an NHS Endorcrinologist appointment next month but he is not interested in getting to the bottom of my problems - he just said it was 'my age' and recommended anti depressants. I have asked Dione for a list of local private specialists who are prepared to at least trial T3. A nurse friend suggested to me the other day that I may have Hashimoto's disease - which has just added another layer of complexity. I will ask for the peridoxase test when I go next week.
Have a check and see what you can get in your village in Turkey. Members are reporting difficulty in buying over the counter even in countries where its theoretically possible. Its worth starting to build up a stock, now, and learning the ropes of what you can buy. I self medicate and like to have at least 6 months in stock, as insurance for formulation changes and lack of access to buying.
If you've been hypothyroid for years you almost certainly have Hashimotos autoimmune thyroid illness, as that's by far the most common way to become hypo. It brings a few extra complexities and makes you more vulnerable to other autoimmune conditions.
The links between T3 and bone loss are not really supported by the evidence. It may be that being low on thyroid hormone has been more damaging to your bones.
Personally I would say the biggest danger of self medicating is blundering in without a clear plan for how to dose and test yourself, and moving too fast through different doses. Its much better to be slow and methodical, and to do good research before you start.
I have been self medicating with t3 for nearly 18 months. I added the t3 gradually, quarter tablet increased every 2 weeks. I didn’t initially reduce my levo and it was only months later that I tried reducing it gradually to see what difference it makes. I did it at 12.5mcg and waited 6-8 weeks to assess the change. I reduced levo too much at one point and was feeling hypo, tried adding more t3 but that wasn’t good either and that’s how I know what levels work for me. Eventually I got to 20mcg t3 and 125mcg levo and I take them in one dose around 4am.
You will need to work out what doses you need for yourself and you can tweak them to see what difference it makes. You can also try taking at different times of day as that makes a difference, especially for t3. As long as you don’t rush it and pay attention to how you react to them it will be safe. I do finger prick tests through medichecks but not too frequently, they are useful if I cannot tell if my symptoms are due to too little or too much hormone as they can be similar.
T3 is the only thing that lifts my brain fog and it’s so worth making the effort to use it. The transformation is amazing. You should try it. You are so lucky to be able to get T3 yourself as the uncertainty of the next pack getting to me is so unnerving.
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first post
Help/ support please
That went well NOT - Part 2
Weight gain on Levothyroxine
Overactive symptoms but test "Normal"
