I have read many comments on here and I have to say maybe I'm wrong but it concerns me that so many people seem to either stop their medication or self medicate isn't that very very dangerous considering that the Thyroid is on of the most important glands we have and regulates everything including the heart surely stopping meds without an Endo's advice is asking to bring on a heart attack please correct me if I'm wrong but it's very worrying after all we are not professionals.
Dancer
In a perfect world no-one would self-medicate. They would neither need nor want to do so. And I most certainly would not recommend self-medication. Indeed one of the better medical aphorisms is:
"A physician who treats himself has a fool for a patient."—Sir William Osler
But given the appalling standard of treatment received by *some* thyroidally-challenged people, it can be argued that responsible, well-researched, careful self-medication might actually be less dangerous than would appear at first glance. Apart from anything else, self-treating patients might actually be more observant and cautious than those blindly following doctors' orders.
To say we are not professionals is, of course, a truism. But does a medic reading a laboratory result actually have a better idea of how the patient is responding than the patient his/herself actually living this every day?
Nonetheless it is surely best if every patient has a good relationship with a competent medic.
Rod
Im not sure who goes blindly into taking any form of medication.
I can only speak for myself when I say that I investigate all things before they are
accepted and ingested. I believe it is my responsibility to do so. I also understand
*being* a sufferer of Graves disease amongst other very serious health issues that it is a very scary and often confusing time for those that have the disease. I honestly think that if you do not have a good Endo or Dr then you should try to find the right one for you. They are out there be it alternative or Doctorate. Many of us live alone and do not have a support system and im not sure that all the people that self medicate do know what they are doing... My Mother died doing that very same thing she thought she knew better then the specialists sadly she didn't.
Obviously no one can have a better idea then oneself as to how you feel but after saying that a person that has spent many many dedicated years studying Endocrinology or any other form of medicine surely must know what are safe boundaries and what are not far better then a lay person however well informed they consider themselves.
I'm just voicing my opinion as I see it and think it's a gamble and one I certainly would not be willing to take without professional supervision.
Hi there,
I faced the problem of whether to self-medicate by increasing my dose of Levothyroxine or persevering until I found a GP or Endo who would listen to me.
It took me 6 months and 4 GP appointments.Eventually,I phoned the hospital myself and finally received the go ahead to increase my dose.
I then made an appointment with my GP to register my dissatisfaction.After listening to my concerns,we put together a plan for my future treatment.This should ensure I never again have to wait so long to receive effective treatment and my concerns will be listened to.
I had a gut feeling,that self-medicating was wrong for me,only because,without the test results showing "I wasn't right" I couldn't have persevered in persuading the docs to change my meds.For me,it was important I had the continued evidence.
However,this is my experience and my beliefs.I would not dream of telling anyone else what to,as everyone has a different experience.I can only say,after much deliberation,I chose not to but can see why some may choose this as an option,
Regards,
PaulaG
Thyroid UK does not advocate self-treatment, we STRONGLY recommend that you are monitored by a healthcare professional.
Louise
Charity Secretary
Thyroid UK
I appreciate where you are coming from but statistics state that there are 2 % of the population affected by hypothyroidism. If 10% of them are still not happy with the way they feel that is 200,000 people. A lot of these will carry on regardless feeling unwell, some will try and do something about it . If that lowers the figure to 100,000 then there are this amount of people seeking help from what appears to be a handful of good Endos. I think a lot of people start to self medicate as a last resort and not in a gun ho way.
Regards,
Tina.
have not suggested anybody is self medicating in a "GUN HO" way! Hypothyroidism is a very serious illness/Disease and I think it is dangerous to stop medication over medicate or under medicate. People in Clinics in America have for years been given Thyroxine to loose weight with some very serious side affects. An overactive or (over stimulated Thyroid because of over medication of Thyroxine.) Can cause a Thyroid storm...... I was 70% overactive had a thyroid storm "not from over medication" ended up in ICU and almost died before I was diagnosed with Graves and given radiation to kill my Thyroid. Not all medication that helps your body always makes you feel better there is almost always a side effect, it is there to support it remove it and you lose that support or find a medication that does suit you with the help of a good medically trained person. What Ive said makes sense otherwise the Group Admin would not have felt the need to place a disclaimer here, You just have to keep on and on at the endo or GP until they listen and support you it took me 3 years to find a reasonable one. With a broken neck, Chronic renal failure as well as Graves and on the waiting list for a kidney transplant it wasn't easy for me either but I didn't give up looking. Or self medicate. Ive had a very very rough ride like a lot of people on here. I was and still am in a lot of pain and exhausted from fighting the kidney disease and the Graves. We all need that safety net no one jumps out of a plane without a parachute.
Regards
Dancer
Louise
Absolutely agree. If thyroiditis can make you feel so ill then logically self medication is dangerous.
I have found that levothyroxine is very sensitive to how you take it and other chemicals and compounds.
Think a users guide for levothyroxine is overdue as the hour between taking and food seems critical as does limiting tea and coffee (caffeine) fluoride etc.
Paul
I am under medfication from the doctor, but it doesn't make me well....
so I adjust dosage as I see fit and then use private testing and the doctors tests to work out if my doseage is ok..... I also mainly go by the way I feel. I know if I've had too much or not enough t3.
I currently have a B12 of 300. This is within range but not optimal.... ideally I should be around 800. My doc said apologetically that he could not treat me whilst I'm over 200 and just looked embarrased when I said 300 wasn't optimal....... so I self treat with B12....
How is there a difference self treating with B12 to self treating with thryoid meds.?.....
Nel...
On initial diagnosis the Hospital said I would be back to good health in six months with levothyroxine. Unfortunately this did not happen. My GP is only allowed to prescribe levothyroxine. I would have had to try and find an Endo privately who would prescribe an addition of T3 (I would prefer to try a dessicated product), but there would be no guarantee that he would add another product. Your blood tests are within range so all should be hunky-dory. I do not know how much I spent trying to find out why my healthy was not recovering.
In the end I began searching the net and found lots of info and after pleading with my NHS Endo, I had a trial of T3 to T4 and it worked for me. It was levothyroxine which was giving me all the side effects and I have had no need of betablockers now, but you are directed to other departments to try and find out what the continuing problems are.
If you go the the British Thyroid's site, it warns us about getting information from the internet.
"which give unhelpful and inaccurate information which should be ignored". They themselves have completely ignored Dr Skinner's letter of 2005. They also state that it is outside influences which is the problem if you say you are still unwell on T4.
tpa-uk.org.uk/DrSkinnerresp...
and ignored Dr Lowe's Rebuttal of 2009 and another request in 2010
thyroidscience.com/Criticis...
If levothyroxine was working the BTA would have no need for the above statement as there would be no need for support sites such as this. If you do not have access to the internet you would be completely unaware that there may be another product which could give back some normality to your life..
We need proper medical support to try and use other products safely but when you are taking medication of any kind and you feel worse, you just want to stop taking it. If you go to your GP often they are at a loss, and you may just be labelled 'hypochondriac".
Hi Nel
Please find below some information pertaining to the low toxicity of B12.
Health Risks from Excessive Vitamin B12
The IOM did not establish a UL for vitamin B12 because of its low potential for toxicity. In Dietary Reference Intakes: Thiamin, Riboflavin, Niacin, Vitamin B6, Folate, Vitamin B12, Pantothenic Acid, Biotin, and Choline, the IOM states that "no adverse effects have been associated with excess vitamin B12 intake from food and supplements in healthy individuals" [5].
Findings from intervention trials support these conclusions. In the NORVIT and HOPE 2 trials, vitamin B12 supplementation (in combination with folic acid and vitamin B6) did not cause any serious adverse events when administered at doses of 0.4 mg for 40 months (NORVIT trial) and 1.0 mg for 5 years (HOPE 2 trial) [62,63].
By comparison, taking thyroid meds if you do not need it can cause thyrotoxicosis which in turn can cause atrial fibrillation.
I hope this helps!
Louise
Hi Nell,
I'm not a medically qualified person so I cant really comment on what the difference is.
All I can say is that I would imagine to under or over dose a sick Thyroid is more harmful then an under or overdose of Vit B12 I have to inject myself once every 2 weeks with Aranesp plus I go to the hospital once a month to have B12/iron transfusions. the worst that has happened to me when I had an overload of the B12/ iron was a migraine.
My comment about self medication was not a criticism people are entitled to do what they wish it was written because I care and it worries me not everyone is clued up as much as they think they are. As I wrote I lost my beloved mum because she thought she knew more then the specialists and felt better when she changed her meds round but obviously it wasn't better for her illness.
The Thyroid is a major gland as we all know only to well and I personally would not mess with it's just my personal take on it. I see a very good Endocrinologist and get very good support, I think that's the whole point there doesn't seem to be enough good ones to go round and Dr's are not trained in Endocrinology they are General Practitioners.
I wish you good health
Dancer x
Shaws
I absolutely agree with you, What is needed is proper health support no one should be ignored or labeled! we should be listened to and heard more to the point, then there would be no need for people to have to spend all their savings, hours and hours of searching the net traveling from one part of the country to the other in search of a glimmer of help or self medicating. It's all very wrong and very hard when you feel so sick all you really want to do at times is just give up.
I think this site is fantastic and has helped so many people not give up and see light at the end of the tunnel Ive learnt a huge amount from it.
I wish you health.
Dancer.
I tried B12 as it is widely reported that it helps some people with their tinnitus. It certainly didn't help mine - in that regard it makes not a scrap of difference whether I take it nor not.
However, completely unexpectedly, it helped with some facial nerve pain I was getting. I took 1000 mcg most days for a few weeks and have gradually reduced. Now I just take one whenever I get the slightest twinge - and sometimes the next day as well. And it still helps.
The medical establishment did a hearing test, and even an MRI of my inner ear, but had nothing to offer me for tinnitus. And pretty much only pain killers for the pain.
I have mentioned B12 to my GP but he was as bemused as I. And I am certainly not convinced that I am or ever have been actually low or deficient in B12.
Rod
Hi Louise,
Thanks for that info about B12, I feel much happier taking it...
Not so sure about the info about excess thyroid meds..... If you take T4 to excess you would have too much of a storage hormone in your blood. You would not automatically convert the T4 into t3 without a signal from the cells that they were short of t3, so you could not go hyper without there being a cellular messaging problem.
In order to eliminate the excess t4 you would make extra reverse t3, which could cause a t3 uptake problem with blocked receptors (blocked by reverse t3). Is this what is meant by thyrotoxic? The fast heart rate would only happen with excess t3 acting in the blood stream. not with excess t4, which is merely an inert storage hormone. Though too much unconverted t4 does cause aches and pains. Is this thyrotoxicosis?
Guess what I'd really like is a definition of exactly what thyrotoxicosis is, Is it too much t3 (hyper) or is it too much T4?
Any ideas?
Nel.
Hi Nel
Please find below a deifinition of thyrotoxicosis from medscape, I hope it helps:
The term thyrotoxicosis refers to the hypermetabolic clinical syndrome resulting from serum elevations in thyroid hormone levels, specifically free thyroxine (T4) and/or triiodothyronine (T3).
Louise
Hi Louise,
Makes no sense.... how can you go hyper if you have too much T4? You would need a fault in the signalling from the cells, to tell the liver and cells to convert the Storage hormone T4 (Levothyroxine) into the active hormone T3.
The whole point about T4, is that it is an inert storage hormone which can be safely stored in the blood. If we converted it just because it was there, or there was too much of it, then we would all be hyper.... not hypo.
Thanks though for trying...
Nel.
Hi Dancer form Paris..Just thought that l would add to helvella's comment.. if you have been reading me this weekend! sorry if its me to worrying you x that my Gp and Dr P are both aware of what is going on with me.DR P advised l should stop my meds. ( l was toxic) He and my GP are both aware that l am not taking anything at the momment..( since september) unfortunatly they are both at there wits end as to know what to do or how to help me. .Dr P said to take what l could for adrenal support when l could..but with my appointment looming l thought it best to wait and get a new base line from my blood tests ( an indication of whats really going on as well as the temp /bp chart l keep..) it has taken 6months for an appointment for a NHS appointment to come through..( Thursday! though l have ALWAYS HOPE l wont hold my breath!) so l would be in a VERY poorly state if l had continued my med/supplement regume..it was the stop starting of meds that proved it was them making me sicker then l need be..my GP would still be telling me l was having a bad menopause ,his reason for the sweats l was having..but l know through trial that the menopause sweats wouldnt come and go along with taking or not taking tablets. My Gp isnt aware of adrenal and endocrine things he told me he didnt have much of an interest at med school. he learnt what he had to..its hard for people to understand ..that although l feel poorly ( VERY Hashi/hypo and the very strong probability that l have Lupus...which does confuse and add to the puzzle ) that l actually feel better in this state of sickness sleeping well ( perhaps to well!) NO sweats and a functioning brain not that it was up to much anyway! but fog is better than not being able to think at all ..( though it sounds daft to say, BETTER as who should have to choose? how sick you feel) to the way l was in September and all last year...
the Private Dr l saw before Dr P who was very nice and helpful..( but eventually couldnt help) he said from the beggining l should listen to my body and TOGETHER we will sort it out. its weird but you do get a GUT feeling that something is amiss and l have been proven correct many times.you cartainly know if one day you feel bright and have a brain and then after a tablet you are in a fog/braindead and your body hurts. l stick to a strict diet , as l know lm allergic to many food stuffs and l wouldn't have a stable base line to judge how lm feeling if l was eating things l know would also make me feel ill and have a bad effect on me.. l have been in many situations since diagnoses, in the last 4years ( wow where did the time go?) where l was telling the health care profesional that something is wrong and l dont feel good.. l even ended up admitted to A&E with a suspected heart attack..and stayed in for 2days.. another time l was on morphine patches in hospital for a disc removal l kept saying l was hyper..they said it was the morphine ,they said my test results were fine. so l wasnt hyper( over medicated)...l said that the morphine wasnt working as well ..one DR said maybe your metabalizing quickly ( insight)..the others said l wasn't..l was in a lot of pain...but hey 2weeks later((no need for morphine as lm now walking) l'm in A&E with the bad heart! and THEY tell me to lower the dose of the levo that l know doesnt agree with me anyway..
l dont wait weeks or months for permission to stop something that is having a bad effect on me.life is short and l want to be well.l can and do ring ,visit and email my drs ..and they are always aware and state there opinion and advise its not like getting treatment for me...as there is no steadfast answer to anything its like walking in the dark , pushing doors all the time ..Or suck it and see what happens.... l wish we all did fit in the same box and the standered treatment for all is A x B x c once a day! see you in a year!!
lm sorry to say you have to be on the ball and know whats going on with your treament /careplan etc its vital you have a good relationship with your DRs you must have a voice..so as well as listening to them they must listen to you.. ( hard when you are feeling rough) .....with bestwishes donnaxx
I'm so very sorry your having such a terrible time Donna. I hope things will get sorted out for you very soon. We all have to listen to our bodies as an x Classical trained dancer Ive had years of practice doing just that....And ive always had a voice lol 
Ive had a pretty rough ride myself and still fighting.
You take care.
Dancer
Hi,
Whislt i would always consult the professional, what needs to be questioned is who are the professional in the know? -doctors like Dr Skinner/ Dr Peatfield i would trust -am afriad the rest i have encoutered do NOT have the training knowledge or expertise to manage thyroid patients -it took me over 7years to recover my health -in reality it should have been a year and i would not be well now but for my proactive appraoch and being willing to become an 'expert patient' -some thing that the government advocates. So yes do listen to the medics and there advice -but choose wisely who that medic is and make sure that they truely know this subject -many many DONT! having some knowledge my self helps me to spot those purporting to know what they evidently know nothing about -those medics are truly a dangerous breed!
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