I had a full thyriodectomy in 2018 after having graves disease for 8 years.
(worst decision of my life đŞ). I am suffering with hairloss, tiredness, insomnia to name a few but the worst is the 2 st weight gain that is depressing me so much.
GPs don't seem to care or understand and send you home with levothyroxine and tell you all of the above are side affects and deal with it.
I am currently on 150 mcg Levothyroxine.
My question is where can I get T3 medication and how much do I take along with the levothyroxine are there any other suppliments I can take to help with my symptoms especially the weightgain.
Any advise will be greatly appreciated.
Many Thanks
Kelly
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KLM77
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It's your legal right (in the UK) to have your results so they can't refuse, although if they want to be awkward they may make you wait 30 days for your results. They may offer online access to results which you will have to register for, if not then they must provide a print out. However, they wont have done all those tests so you might need to do a full thyroid/vitamin panel privately with one of our recommended labs:
Thank you so much for the above advice. I have written to my GP surgery today requesting the results and any additional blood tests. Fingers crossed it wont be too long until I have the results.
I too have Graves Disease but went through RAI ablation back in 2005 and became very unwell some 8 years later and yes, I deeply regret ingesting this toxic substance and wasn't given a choice, and just totally compliant believing and trusting in the system.
A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.
T4 - Levothyroxine is a prohormone and needs to be converted by your body into T3 the active hormone that runs the body and said to be around 4 times more powerful than T4.
Your own ability to convert the T4 into T3 can be compromised by non optimal levels of ferritin, folate, B12 and vitamin D, inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing - so apart from being against the clock, we can do something about most of these issues and why it's necessary to run a full thyroid blood test for TSH, T3, T4 inflammation and the vitamins and minerals as detailed above.
The thyroid is a major gland and the body's engine, responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.
We generally feel at our best when our T4 is in the top quadrant of the range as this should in theory convert to a decent level of T3 at around a 1/4 ratio T3/T4.
As for Graves we are looking at an auto immune disease for which there is no cure and quite why your immune system decided to go on the attack the 64million $ question.
You might like to dip into the Thyroid UK website and read around all things thyroid and where you can get th appropriate blood tests run if you doctor isn't able to help you :
You might like to dip into the Elaine Moore Graves Disease Foundation for all things Graves and maybe read around life/style and complimentary and more holistic options as this is where I found myself 10 years after RAI thyroid ablation and learnt about myself.
Some people find that T4 seems to not be as effective as it once was and find the addition of a little T3 - Liothyronine - to likely replace that lost when they lost their thyroid - restores health and well being.
Some people can't tolerate T4 - Levothyroxine and need to take T3 - Liothyronine only :
Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland and derived from pig thyroids dried and ground down into tablets referred to as grains.
NDT was the original successful treatment for hypothyroidism used for over 100 years and on the back of which Big Pharma launched separate T3 and T4 thyroid hormone replacement medications in around the last quarter of the last century
Thank you so much Pennyannie for your response. I have a lot to learn. I
have put and shut up for the last 4 years but I am now sick of feeling the way I do. I want the old slim, happy, up-beat person back and so do my family. It was very wrong for us both to to have been pressured into having our thyriod removed. I wished I'd have researched before hand. I was told in not so many words "at least if you don't have your thyriod it can't turn cancerous".
My daughter also has graves and is being pressured to have Radiofrequency ablation. I have always refused but she is an adult now. Luckily I have been ale to dissuede her.
I will definitely take time out to look into all the info you have kindly provided me with.
Yes there is likely a genetic predisposition to having Graves and maybe if you think about yourself there is a family member maybe a generation away from you with a thyroid health issue.
Graves is said to be a stress and anxiety driven AI disease and be triggered by a sudden shock to the system like a car accident or unexpected death of a loved one, though it can simply seem to happen totally out of the blue - and once triggered it's likely to happen again so it's important to understand yourself and your personal triggers.
Your daughter might like to keep a copy of both the following research papers under her pillow :-
The most recent research is suggesting the longer one stays on the AT medication the better the outcome for the patient : pubmed.ncbi.nlm.nih.gov/338...
That's only natural - am sending a couple of hugs and one or two extras !!
My experience with mainstream medical was one of being made to feel that I should just put up and shut up - and think that's mirrored by many other forum members experiences.
I fell into this forum when researching low ferritin around 7 years ago and now I am much improved and have my life back and come back to give back where I might make a difference and help someone else.
If you press on the icon next to me name you will be taken to my profile page and there read my story, and my questions and replies throughout my time on the forum.
We are a patient to patient forum, and a safe place should you and/or your daughter want to share anything with other forum members and we try our best to offer support to everybody and there is a great deal of experience and knowledge on this forum.
âMy daughter also has graves and is being pressured to have Radiofrequency ablationâ
Have to ask - Was it definitely Radio frequency ablation? or did you mean Radioactive Iodine?
Either way no one should be pressuring her into either treatment.
Have you asked if your practice if they offer online access to medical record? If you are in England they are contractually mandated to offer online access. Can take time to set up. So see of available.
Hi PurpleNails, you are correct. I got mixed up it is Radioactive Iodine.
I feel like she has been abandoned by the NHS now that she has become an adult. From ages 12 to 18 we travelled to Alder Hey in Liverpool to see the most fantastic consultant a few times a year and she was brilliant.
Even arranging treatment for her hyperhidrosis, an ECG test that detected a heart murmur, got her on propranolol. She spent several years on a clinical trial called block and replace where she took both carbimazole and thyroxine and this worked wonders, a lot better than just carbimazole. I got my vibrant sassy, energetic teenager back
Now that she is an adult and not under the childrenâs hospital anymore all this has stopped and she is on carbimazole only and being pushed to have the Radioactive iodine. The reason they gave is that it is better for her health to be on levothyroxine for life than carbimazole.
Having seen what I am going through after my thyriodectomy she is sticking to her guns and refusing the iodine treatment
I think the way forward is for me to arrange private blood tests if our GP can not help
I will definatley look into getting access to my medical records.
Im staying on long term carbimazole & I have a nodule which isnât expected to alter.  Given sufficient time & the right monitoring your daughter Graves has a good chance of going into remission. Â
Iâve come the conclusion itâs the cost of continued specialist monitoring medics want to prevent, medics view hypothyroid treatment easier to manage. Â
Itâs a policy set with a one size fit all approach with finance and & efficiency partly as a factor. If carbimazole is keeping her well she shouldnât be pushed into a treatment sheâs not comfortable with.Â
There are forum members on Block and Replace - it is a treatment option and as far as I am aware, not age dependent.
Maybe this treatment option is not offered at your hospital, or possible there isn't a competent endocrinologist with the skill set and able to monitor and dose Block & Replace .
I was diagnosed back in 2003 at age 56 with Graves and told at my very first endo appointment, though well on the Carbimazole that I was to have RAI the following year as the Carbimazole was too dangerous to stay on long term :
I didn't know anything back then and was totally compliant and had RAI the following year and became very unwell around 8 years later and referred to as a conundrum and now self medicate.
They changed my Levothyroxine brand about 2 years ago to ALMUS.
I don't take any vitamin supplements. Dr. gave me calcium and Vit D for a few months after my thyroidectomy and then told me to stop (4 years ago).
I used to be called for blood tests every 3 months but nothing for almost 12 months until I requested one last month.
The latest blood test showed I also have gilberts syndrome which I was told there is no treatment for and I can live with it. I also have a blood test on Thursday for coeliac disease.
I have also been lucky enough to get a telephone appointment with my surgery who will call me in the next 48 hours. Gone are the days of seeing a GP.
Luckily I have health-cover with my job so I might investigate that avenue and see if I can get any help there.
Once again thank you all for your help. I have learnt more in half a day than 10 yrs back and to to my GP (a different one everytime so you start at square one)
Many people find Levothyroxine brands are not interchangeable.
Many patients do NOT get on well with Teva brand of Levothyroxine.
Teva contains mannitol as a filler, which seems to be possible cause of problems. 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)
Glenmark or Aristo (100mcg only) are lactose free and mannitol free. May be difficult to track down Glenmark, not been available very longÂ
Most easily available (and often most easily tolerated) are Mercury Pharma or Accord
Accord only make 50mcg and 100mcg tabletsÂ
Accord is also boxed as Almus via Boots, and Northstar 50mcg and 100mcg via Lloyds ....but Accord doesnât make 25mcg tablets
beware 25mcg Northstar is Teva
Mercury Pharma make 25mcg, 50mcg and 100mcg tabletsÂ
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).
Levothyroxine is an extremely fussy hormone and should always be taken on an empty stomach and then nothing apart from water for at least an hour after
Many people take Levothyroxine soon after waking, but it may be more convenient and perhaps more effective taken at bedtime
No other medication or supplements at same as Levothyroxine, leave at least 2 hour gap.
Some like iron, calcium, magnesium, HRT, omeprazole or vitamin D should be four hours away
(Time gap doesn't apply to Vitamin D mouth spray)
If you normally take levothyroxine at bedtime/in night ...adjust timings as follows prior to blood test
Similarly if normally splitting your levothyroxine, take whole daily dose 24 hours before testÂ
If testing Monday morning, delay Saturday evening dose levothyroxine until Sunday morning. Delay Sunday evening dose levothyroxine until after blood test on Monday morning. Take Monday evening dose levothyroxine as per normal
REMEMBER.....very important....stop taking any supplements that contain biotin a week before ALL BLOOD TESTS as biotin can falsely affect test results - eg vitamin B complex
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