Any input or your thoughts/opinion on this would be so appreciated and if you have had Graves - did you experience this and if so what worked for you?
I have felt extremely lethargic and had hypo type symptoms for 16 months - totally unlike me - I am very active and on the go ( hyper diagnosis initially 2003 - Graves and OK until end of 2011) I'm sleeping all the time and not fresh on waking so given anti-depressants on top of Levo to help sort. One GP said I was now Hypo.
Now being told by a different doctor that anti-depressants are causing my problems and come off them quickly and get a job.
I neglect alot of things as not interested and lack motivation (I had these symptoms and sleeping all the time BEFORE I was put on anti-depressants! and I am not really functioning as a human being)
I had an expectation that (anti-depressants) should ideally make a positive difference but this is not the case so maybe coming off isn't a bad idea but I still have the health problem/symptoms.
Nothing has changed and doc will not refer to an endocrinologist as blood tests OK. I also have watering eyes all the time - terrible. Weight gain and huge sensitivity to heat and lighting. No interest in anything and normally I am completely work-oriented and extremely positive. Fed-up as at a loss as to what might be wrong with me and stuck - health problem isn't shifting and I'm not able to get endocrinologist referral / their professional opinion. Its sleeping all the time that worries me - they tell me I haven't got any of the fatigue illnesses ME etc but no tests done on anything other than thyroid. They didn't text for Vit D.
The symptoms you mention are almost certainly thyroid related - or perhaps I should say lack-of-thyroid related.
I had a thyroidectomy for Graves' disease years ago and I was NEVER depressed while I was having the right amount of levo. I became depressed when it was reduced by a third, and the doctor would have happily given me anti-ds but I flatly refused, told him I was depressed because I felt so ill. He finally agreed to restore some of the dose and now I am starting to feel better. I believe I would benefit from having some T3 because I have no thyroid, and I would not be surprised if the same were true of you, but although it is a permitted treatment most GPs refuse to give it.
You really need your T3 level tested as that will tell you how your body is dealing with the Levo. I've been reading up on Graves' - early days yet - because in the past, most of what I have read deals with underactive thyroid, but with a Graves' patient a thyroidectomy does not end the Graves; situation neccessarily, it solves the overactive thyroid bit but we still have Graves' disease. I am beginning to understand that if you still have the Graves' antibodies in your blood (Thyroid Stimulating Immunoglobulin, or TSI) that will affect the TSH in some way because it affect the TSH receptors in either the hypothalamus or the pituitary (not sure which yet - still trying to understand) which means that your TSH is artificially reduced - so the TSH test is even MORE irrelevant than usual!.
According to the DR Toft book, your TSH should be really suppressed anyway, and in his words 'As long as the T3 is unequivocally normal' you are going to be fine and should feel well.
If despite taking enough T4 you still have low T3 than you really need T3 as well, in which case it may well be wothwhile getting referred to a thyroid specialist - preferably one who is on the Thyroid UK list.
I understand what you mean by still being stuck with Graves! (its an amazing name for a disease though!!)
It is rather complex and like you trying to understand it all can be a challenge. I was most interested in your comment about T3 and what Dr Toft suggests. This is great because its something I can discuss with my GP. They definately do not do T3 tests but it sounds worth getting them done elsewhere as it costs alot is lost time trying different thyroxine doses and well its an important reading.
I really appreciate your time Marram, I cant tel you how helpful this is. I have started taking Vit D3 and Selenium as I didn't know how important these are for your immune system. Selenium is good for your hair too.
I looked at this blog and how interesting. My test was done at 10am - fasting and on the day I didn't take levo meds until after bloods.
Prior to this I had all tests done since diagnosis am but AFTER! I had taken meds so only found out by accident that you should not take meds on the day until after blood tests. The person who told me has a hot-line to some top endocrinologists and warned me about this. The nurse didn't know this or doc. but makes sense and I gather it surges blood with thyroxine and gives a reading that can be abit out.
From reading this blog I also think there must be an "ideal" for best readings to reflect your health because if you dont take meds on the day of blood test and its done pm and your last thyroxine was at 5.30/6am the previous day! then I guess less circulating than if same test done in morning. Quite a few factors affecting things.
I will keep a reference of this blog - it demonstrates what is so hard to convey to GP's sometimes. Thanks so much Rod.
My doc is going to think I've undergone some sort of metamorphosis and my thyroid condition is causing latent medical expertise to surface! He wont know whats hit him. I'm actually looking forward to seeing him now!
Thanks Glynisrose, I realise this now and I hate anti-depressants but I was vulnerable and feeling low when suggested and nothing else worked. The way I think now is so different - and accurate and intelligent thyroid treatment is everything. Treating the symptoms without looking at the underlying cause thoroughly enough isn't the best approach and I have found this out the hard way this time. Its like a car - if you dont get the diagnosis right first time it can cost you an arm and a leg!!
Ask for T3 to be added to your levo. Email louise.warill@thyroiduk.org and ask for a copy of Dr Toft's article in Pulse online. Q 6 wherein it says it is o.k. to have a suppressed TSH and the addition of T3 if still not feeling well.Send a copy of this to your GP highlighting the appropriate question before your next appointment.
T3 is the active hormone which is required by every cell in our body and the brain has the most. If you put Depressionon the above Searcg you will come up with a few articles on Hypo and depression. Maybe your GP should also have a copy of these too.
I have an apt booked for 15th with my GP and this is so helpful. My doc has been off for ages so had loads of locums who dont read my notes and its hard work!! but I feel determined - I realy need to sort this as for ages just feel like I'm marking time. I know everyone on this blog wants their life back too if unwell. Why not - I feel for people who are struggling with any thyroid illness as it can be OK but then it can be very difficult and unpredictable. Other people are telling me about T3 aswell Shaws - I'm on to it now! - its so important. Thanks everybody for being so kind to respond, it makes such a positive difference that people are sharing this information. x
I have just googled your anti-ds as I've never heard of them, inspite of having taken various types. They act on seratonin and noradrenaline and just seem an odd choice.There are particular warnings re blood pressure and restlessness.You should not come off them quickly, but phase down, the withdrawal symptoms will be horrible otherwise. Your doc could be right when he says the anti ds are causing some symptoms, but he should try to get to the root cause of why you felt ill beforehand thyroid related or otherwise.
Has he done a general blood test? To be honest if I were you I would phase myself off the Duloxitine. I'm taking Mirtazapine and am phasing off.
You are ill and your doc has a duty of care to listen to and find out why.
Thank you. You are right. I was prescribed these anti-D's but they are for people who are suicidal seemingly (I'm not this) and was shocked abit that this was my option - I think they are called Level 2 anti-depressants. They have alot of side-effects - the last doc Googled !! all the side effects while I was with him and let me read them but I'd been on them since Jan! so knew all this but dont think he agreed with other GP who put me on them and wanted to scare me off them. He has a point I guess but one says - take 6mts minimum to come off them, another says 2 weeks and another tells me I need to be on them for a year from the time I start to feel better. If we could only know where doctors are coming from sometimes....dear me. It feels like the "google school of medicine" - you need a really good sense of humour if you have a thyroid problem.
Go back to your doc before phasing off, by this I mean cutting down, eg 3 quarters for 2 weeks, Half for 2 weeks and so on. Expect to feel ill, but not ill ill ie having to take time off work. Insist that he listens to your symptoms, book a double appointment if needed. Get a general blood test.My doc referred me to a counsellor which was very helpful.
I think I've probably had a mix of mental illness and untreated hypo. Plus unrelated probs such as GERD. There is no shame if you you do decide to stay on your anti ds or swap for a milder SSRI which acts only on seratonin.
When I speak against the use of Anti-ds It is very personal, I would never want to offend anyone by trying to make them ashamed of taking them.
So many doctors offer them to thyroid patients, and many are convinced by the doctors' argument that their blood results are 'normal' and therefore it must be something else! I just feel strongly because they ARE difficult to get off once you are on them, and while it is true that they will help with the depression, they will not stop things like damage to the heart which can be one of the many complications of untreated or under-treated hypothyroidism. I was even sectioned at one point in my life because of an OVERactive thyroid being misdiagnosed as anxiety neurosis, and they tried to give me Valium (which I also refused.).
There was a study done years ago with women in a Mental hospital for various mental illnesses from depression to paranoia, and many of them were cured of the mental illness by thyroid treatment, yet they had been considered hopeless cases. Sadly two of them had been so long in a hypothyroid state that they died of heart attacks.
My own doctor asked me if I was depressed, and I said "yes, you would be depressed if you felt ill all the time like I do. I feel there is no hope. But I'm depressed because I'm ill". He said "What came first, the chicken or the egg" (ie you are ill because you are depressed). I said, if you can't work that one out, doctor, I might as well go elsewhere right now!! It is pretty obvious that the chicken came first, because the egg needs a chicken to keep it warm or it'll DIE! And I'm depressed because I'm ill, not ill because I'm depressed!!
You make alot of sense. I'm so sorry you have been through so much. I have heard that alot of people have experienced some unfortunate mental health treatment because of misunderstanding of thyroid conditions. Its such a shame. I haven't read her book but Claire Rayner seemingly had experiences with mental health institutions and was very unwell only to find she had a thyroid problem. This was one of the reasons she changed her life around to have a career helping people. There are alot. On a lighter note seemingly Ronald Regan and Nancy Regan had thyroid problems - one had it first and the other then developed a problem and I read that their dog Mitzy I think was its name also developed a thyroid problem. When I think of the three of them! you have to admire both his and her achievements and I bet it was eventful and they must have felt unwell over the years - not to mind Ronald being President of the USA. Its inspiring....but they were really open about it seemingly which I think is great.
Need to correct an error in my last message...how could I have got this so wrong!? It was George Bush and Barbara Bush who had the thyroid problem and Millie their dog. Really sorry and to the Regans - my concentration lapsed slightly and I just dont know how I could have mixed them up! Apologies to all.
I appreciate this you know. I realise I need my GP to stay put!! as I can get things taken seriously and have consistent treatment - thats half the problem. I do intend to come of meds (Anti-D's) slowly but as quickly as I can too and concentrate on proper diagnosis from now on - whatever it costs for blood tests.
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Graves disease symptoms?
Advice please- GP wants me to stop levo
Can I please ask some advice?
Please help with blood results.
Posting again as no replies...can anyone help with my results?....
