hello ,Iam new here and i hope to get some answers , on a life threatening situation concerning my son . He had his thyroid removed 5 years ago, due to Graves disease and it was decided to do so, as he suffered suffered badly from hypothermia and headaches which were so bad he was unable to get on with his life in a normal way, he has been on levothyroxine and has had numerous blood tests done after the op which showed all in order,
5 years on the headaches and the hypothermia persisting almost daily.
can all this be a result of a misfunction of the thyroid before the operation , which for some reason is persisting to this day? is it connected to a thyroid function in someway. its needless to state that we have consulted numerous doctors , and have had all kinds of blood tests, CTs, etc.
I do hope some one will read this and shed some light in this darkness, thank you,
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Kerkyra-1953
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Have you looked into other thyroid meds ie liothyronine or NDT? Often once thyroid removed, we need some form of T3 meds to increase our temperature. Lots of good people on here to advise you.
Thank you very much, no we have not, does T3 increase ones temp? i shall look into the other 2 meds you have mentioned, and see if they are available here, Depression seems to have set in as well, i do not want him to loose hope . He is a brilliant young man , with a family and he has been fighting this for so many years, I am grateful for all the help you may give us,
Do you have any recent blood results to share with us? We need the TSH, T4 and T3, also any vitamin levels like B12, Iron and Ferritin, Vitamin D and Folate.
Most people who don't have a thyroid need T3 and do well on NDT.
Yes, he has, may i post them here? He is taking a product called T4. Greek made, it is a medication given to all, with thyroid problems, i am not sure it is what it should be there have been some problems in the past,
For full Thyroid evaluation he needs TSH, FT4 and FT3 tested. Also important to test vitamin D, folate, ferritin and B12
Low vitamin levels are extremely common, on levothyroxine
Ask GP to test vitamin levels
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 .
Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).
This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)
Often after thyroidectomy patients need addition of small doses of liothyronine (T3) prescribed alongside levothyroxine
T3 by Uni Pharma is cheap and easily available in Greece on prescription
Yes we are in Greece, thank you, he has all that, and has been tested multiple times, plus all the vitamins, i will be able to give more details when i get the results in my hands,
Your description of your son's condition is worrying because it seems back to front. You state hypothermia with hyperthyroidism (Graves). Accidental hypothyroidism (hypothermia hypothyroidism e.g. <35°) comes from underactive not overactive thyroid. So removing his thyroid would achieve nothing (if it wasn't working) if not just to make it worse. I would expect a host of other symptoms.
Secondly on that temperature level I would expect to see brachycardia (slow heart rate and low blood pressure). This can produce excruciating headaches. I'm assuming you check his resting heart rate and blood pressure regularly? Please post the results on these in addition to blood tests once permissions have been granted.
But I agree this could be a T3 issue. So this test is vital and believe it or not may not have been checked by his doctor so don't be too surprised if you don't see it. It's also essential to know the timing of the test. So please post that as well. No thyroid test should be done after 10am or close to a medication dose.
I'm sending my best wishes to your son for his health and happiness.
Hi just to say there are kind and knowledgeable people on here and they will give you help if your son permits you to post his results. They will look and see what the results are saying and give you their thoughts.
Sending you best wishes as you must be worried about your son. Your dog is lovely.
Hi, I have Hashimotos and hypothyroidism. I have extremely low temperatures and some headaches too. T4 medication didn't help at all. I currently take T3 only and it definitely regulates my temperature ( although a few hours after each dose my temperature drop dramatically until I take my next dose) Get your son checked for Hashimotos and ask his doctor for a trail of T3 medication. Best of luck. Its scary when your temperature drops so low. I brought my daughter to the park for 30mins yesterday and Although I was well wrapped up by the time I got home my temperature was 35.2 degrees! I took my t3 and 20mins later my temperature went up to 36.4 ( normal).
Graves is an auto immune disease and as such it is for life :
It's in the blood and DNA and there is generally a genetic predisposition and something has triggered the immune system to attack the body.
I read that Graves can be triggered by a sudden shock to the system, like a car accident or unexpected death of a loved one and is said to be a stress and anxiety driven autoimmune disease.
When Graves attacks the thyroid it is because the thyroid is such a major gland that the symptoms experienced can be frightening with some considered life threatening.
The thyroid is commonly referred to as the body's engine, or others prefer to compare the thyroid to being the conductor of all the body's orchestral sections including the woodwind.
The thyroid is a major gland responsible for full body synchronisation including your physical, emotional, psychological, emotional and spiritual well being, your inner central heating system and your metabolism.
Loosing the thyroid for an autoimmune disease does not solve the underlying immune system response and can simply compound the health issues if one is reliant on just looking at blood test results.
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 said to be at about 10 mcg plus a measure of T4 said to be at about 100 mcg.
Personally speaking I just think it makes sense to replace like with like and that at least both synthetic T3 and T4 are on the patients prescription for if, and probably when, both these vital hormones will need to be prescribed to restore well being.
T4 is a storage hormone and needs to be converted by the body into T3 which is the active hormone that the body runs on and it is said that T3 is about 4 times more powerful than T4 with the average person utilising around 50 mcg T3 daily, just to function.
The body's ability to convert the T4 into T3 can be compromised by low ferritin, folate, B12 and vitamin D so these core strength vitamins and minerals need to be maintained at optimal levels to convert the T4 thyroid hormone replacement.
As you will see from the above living without a thyroid means you have lost, at least, your own T3 thyroid hormone production and that in itself equates to around 20% of your overall well being and although the body will try to compensate in the short term - long term you may well be struggling with various health issues.
Some people can get by on T4 only, some people simply find T4 seems to stop working as well as it once did, and some people simply need to have both T3 and T4 dosed independently to balance both T3 and T4 in the ranges and restored to a high enough level in the ranges to be acceptable to the patient's well being and health requirements.
It is a massive learning curve, and suggest in the first instance to read around Graves Disease on the Elaine Moore Graves Disease Foundation website and arrange a full thyroid panel to include the vitamins and minerals and then post back here the results and ranges.
I'm with Graves Disease post RAI thyroid ablation in 2005 and became seriously unwell around 8 years later and found no help in the conventional mainstream medical arena.
I first purchased Elaine Moore's book and then found myself on here looking for answers, with just a ferritin level of 22 and, as they say, the rest is history.
There are fully details on my profile page, though believe everybody's journey with Graves is unique to them - it is a poorly understood and badly treated autoimmune disease and the patient does need to become their own best advocate.
I also found the following book very useful as it is written in an easy to understand manner by a doctor who has hypothyroidism. Barry Durrant-Peatfield - Your Thyroid and How To Keep it Healthy - I know it reads strange - as if without a thyroid how is this relevant - but it is as we need to know what this gland did so we can try and compensate accordingly.
I don’t have thyroid and experienced hypothermia when was on inadequate/low dose. I recommend switching him to Tirosint- it’s Swiss made, much better absorbed replacement, highly effective and is used for people with absorption issues. It lowered my TSH from 34 to 14 within one dose.
Lots of great answers on here already. My additions would be, if he hasn't done so, to also look at diet & lifestyle. I have hashimoto's & was still pretty ill until I switched to the Autoimmune Protocol Diet, which I've adapted to suit my body (e.g. I have no issues with eggs).
I now also do cold water swimming - and have actually found that has also been hugely beneficial - I am more tolerant of the cold and it has had a huge impact on my mental health. But I don't think the water's as cold in Greece so the only option on this would probably be cold showers!
I wish your son all the best - let him know he's not alone!
Hello every one, firstly i wish to thank you once again for your replies and all the information you have given me. at last iam getting involved and i can see from your replies that this condition is directed to the thyroid or in his case the medication he is taking ie T4 all these years, pre and post operation. The key must be here and this is what he has to look at , as it looks like the meds do not work the same from person to person, and further research has to be undertaken, I will try to get the latest blood results from him, and get your advice, We tend to take doctors word as final it looks like its not the case here with thyroid sufferers . I have found the blog of dr. W. Childs which gives clear articles on the matter as well.
He is 40 years old now, very well educated holds down a responsible job. and i always felt he can handle it, But his clinical condition is not getting any better, in fact its getting a lot worst. and i am worried he will not be able to cope with this for very much longer, I have to get the last blood results but i have to tread carefully . In just 48 hours i have learned so much and i feel this is only the tip of the mountain,
The procedure is a blood test, TSH T4 T3. and only T4 is given according to count. And that is it. i will be back soon with the tests, thank you once again,
Dr. W. Childs is he known here, i see he has supplements as well,
T3 was most definitely a game changer for me ! It gave me my life back and since going gluten and dairy free I have much better health including a better temperature!
Sally, it seems like taking T3 with T4 is the answer . Its obvious that one can not take what the doctors say as it. < take 175mg T4 > and out the door. He has started taking T3 with T4, for the first time after all these years. It looks like diet is very important as well. If any one has had any experience please comment. Our diet is Mediterranean , thank you,
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