Ok so after my last post I went to the Dr today wish I'd never bothered please see my other post for blood readings.

[onemum]

After going to my Dr because I felt so bad I was sleeping all day and really felt so sick I asked if he would look at my last blood test to see if I was on the right amount of thyroxine please look at my other post for readings I'm on 100mcg. Well I was until today my Dr insists I am over medicated and says that's why I'm so tired and really not well so he's put me down to 75mcg. I asked him about T3 and he told me its not been proven that it helps in any way and they are not aloud to give it to anyone in the West Glamorgan district as the labs would not allow it. So now I'm totally confused and don't no what to do next?? The one good thing is he did send me for a full blood count test so I should no soon if I'm lacking in iron or anything else I would be so great full if anyone could help iv had some lovely people on here giving me really helpful advice but really don't no what to do next changing my Dr isn't really a good move because of were I live. Big thank you to all of you who have read and advised me

[JemimahR]

I had a total thyroidecty in 2010. My endocrinologist - a Professor, is still struggling to get my levels 'balanced'. I take 75mg thyroxine and 30mg T3 supplememt. I had severe Graves Thyroxicosis and my body now will not convert T4 to T3 hence requirement for additional supplementation. GPs don't like prescribing T3 as it is very expensive! In addition there are concerns over long term impact on osteoporosis and atrial fibrillation. I would like my T3 dose increased as I still feel wretched however my Endo is concerned about these possible issues arising in 20 years! I havent seen your thyroid results but ypu need to ensure that you have T3, T4 and TSH to get a true indication of your levels. often Drs just rely on T4. I would ask for a review by an Endocrinologist and seek expert advice. My experience of GPs is negative in terms of thyroid. They are 'Jacks of all trades'. Your GP is giving you uninformed advice - as you'll see there a hundreds of us on T3 supplementation and it works. Research an Endo prior to asking for a referral - you want one who has an interest in thyroid (most specialise in diabetes) so you can ask for a referral to someone specific. Good luck.

[marram in reply to JemimahR]

If you are not converting, then you might find that any amount of T4 is going to make you feel bad. I also had a TT due to severe Graves' thyrotoxicosis - I had Thyroid Storm - and, like you, I discovered I was not converting properly, I was on Levo only for over 30 years before anything was done, I had to go private. Dr BDP recognised that I was not converting and it was causing toxicity.

I have reduced my T4 and introduced and gradually increased T3 - but I am having to buy my own. The less T4 I have and the more T3, the better I feel. He also found I had severe adrenal fatigue due to so many years of T4-only, so I am taking NutriAdrenal as well.

I was having frequent palpitations and irregular heartbeats - which my doctor 'knew' was caused by over-treatment. He was only happy if I was on 100mcg Levothyroxine and statins and blood thinners (I had mini-strokes when my Levo was cut by a third) and ppis to help the stomach damage from the blood thinners plus 2 different inhalers for my 'chronic asthma', Amitriptyline to help me sleep through my chronic pain and codeine to help with the 'IBS'. He also said it was normal to be constantly tired as I am 68.

I am now taking 50mcg Levo, with T3 (43.75mcg - they're in 25mcg tabs!) my cholesterol is nearly normal from over 10 despite taking NO statins, I am reducing the blood thinners and ppis gradually, no 'asthma' hence no inhalers, no Amitriptyline, no codeine as my IBS has all but disappeared, and I somehow manage to stay awake most days until at least 6pm!. The palpitations have all but disappeared.

I suppose my GP would panic because my TSH shows I am 'overmedicated'.

[JemimahR in reply to marram]

Thanks Marram. I too had thyroid storm and have also recently been diagnosed with thyroid acropachy which my Endo failed to pick up! Really losing the will. The last 3 years have been a roller coaster what with health and personal issues (divorce). Am seeing my Endo today and going to discuss the possibility of Levo causing toxicity and request that my T3 dose is increased. Even though my TSH is suppressed he is adamant that there's something else causing all my other complaints. I have been diagnosed as having a breathing pattern disorder but that's hardly surprising considering how severe my thyrotoxicosis was. My level when diagnosed was 73! I have a 5 year old and feel useless as a parent and increasingly useless in general - I can't cope with much including work. Has anyone experienced Dr B. - an Endo in Eastbourne? Also has anyone else experienced thyroid acropachy? As Henertton highlights am fed up of leading a 1/2 life and feeling incapable....

(This has been edited as per guidelines not to name individual doctors or Endos.)

[marram in reply to JemimahR]

So sorry for your troubles, I do hope you can find someone who will treat you right. PLEASE NOTE, if anyone would like to make a comment on the Endo, please do so by Private Message, as the guidelines do not allow naming of individual doctors or Endos.

[JemimahR in reply to marram]

Sorry Maram will do so in future

[marram in reply to JemimahR]

That's OK,

[tilly83 in reply to JemimahR]

Hi Jemimah, I to had a T4 reading of 70. I chose to go for up and down titration of carbrimazole and now on 5mg daily. All bloods appear OK and I feel well. I have also taken steps to deal with my own health - you have five year old and been through a divorce so need to take extra special care. I've found Iyengar yoga amazing, and am very lucky that at the moment I can afford monthly acupuncture and massage. I have cut back on booze, completely given up wheat (easy and feel heaps better) reduced dairy and try hard to stop my busy head from worrying (that's hard with graves but a lesson or two on meditation has really helped)... best x

[JemimahR in reply to tilly83]

Thanks Tilly. I've cut wheat and dairy out of my diet (have the occasional blip). My Endo has now acknowledged we need to try something else and has prescribed armour. Fingers crossed! Good luck - if you can avoid having your thyroid out do so x

[tilly83 in reply to JemimahR]

also take aloe vera with manuka honey and L-glutamine which are both supposed to soothe gut lininig - take both before eating or last thing at night. I went for first proper jog in six months, albeit on the flat, feel so happy to be doing that again....x

[Therese22 in reply to JemimahR]

Who should send me to see an Endocrinologist is it my GP? I am having blood test done again on Thursday I will wait for the results and then will see what I must do next.

[JemimahR in reply to Therese22]

Make sure they test t4, t3 and TSH levels as they cannot get the full picture without readings for all three. It will then be your GP who refers you. If you have thyroid probs you should be under an Endo anyway. Good luck x

[Hennerton]

I had TT in 2006 and felt ill for years on 75/100 T4 on alternate days. Eventually saw an endo privately and am now under Dr S on T3 only. I also appear not to convert the T4 to T3 and every time I have tried to add in NDT or T4 I begin to feel ill again. I am prepared to take the bone and heart risk, if in fact it actually exists, as I was leading a half life anyway. Hope you get help soon but you need to find the right endo, as Jemimah says. Doctors seem to know very little about thyroid and sadly most endos too, as diabetes seems to be the main speciality.

[Marz in reply to Hennerton]

..there is a book on Amazon called - Thyroid and Heart Failure - you can read bits on line. The Foreward is enlightening. It is a book detailing research being done in Pisa Italy - and states that for the first time Endocrinologists and Cardiologists have put their heads together for this research project. As we know most specialists like to keep their knowledge in little boxes and so people spend time going from consultant to consultant for various examinations/tests. It makes interesting reading - just the chapter headings - as you can feel that T3 is the star of the show ! There are also papers published on PubMed linked to this research....so in my humble non-medical opinion, optimal levels of T3, preventing the Low T3 Syndrome is the way forward.

[JemimahR in reply to Hennerton]

Hi Hennerton, can I ask what dose of T3 you're on and also (hope this isn't too impertinent) what you weigh as my Endo keeps saying due to my weight I'm on the correct amount of T3. Thanks Jem

[Marz]

Read all you can so you will know more than your GP on the next visit. Do you have Dr Tofts book - so inexpensive and available in chemists - Understanding the Thyroid - and as he has written it on behalf of the British Medical Association then he is in the same club as your GP ! - so your GP will have to sit and take notice. T3 is expensive in the UK - only because the NHS are lacking in business acumen and do not search for a cheaper brand. I believe it can cost up to 80 GBP's plus for a packet. I live in Crete - and can buy it for under 2 euro without a prescription. I know that does not help you - but just further evidence that the NHS are not there to help people - and are beholden to BIG Pharma.

I have read on this forum that some GP's do not even know what T3 is - so maybe yours is one of those. As it is the most ACTIVE hormone and needed in every cell of the body - how can they overlook it. You also need the FT3 result so you can see if you are converting the T4 tablet into the ACTIVE T3. So the TSH needs to be 1 or below - the FT4 high in the range - and the FT3. If the latter is low then you have a pretty good indication that you are not converting too well.

Please consult with Thyroid UK website to search for a good doctor/Endocrinologist in your area.

Hope you soon feel better........

[Hidden in reply to Marz]

Regarding T3....... My GP said to me "Don't go down that avenue or you'll lose me".......I see an Endo in November so only hope I can discuss it with him!!

[jacksprat]

A couple of years ago I was taking t3 only on the advice of Dr P and buying my own. The new doctor at our surgery sent for me. He told me he wanted me to see an endocrinologist who was also his personal friend and was very good.He had mentioned to him that I was taking t3 and the endo had informed my doc t4 and t3 were the same thing so I was wasting my time.I told him in that case if your friend ever needs educating I can recommend several good books and don't waste my time with someone who is so incompetent.At the same surgery a year on another new Dr happily prescribed t3 for me in fact he has just increased my dose to 80mcg a day. So I say be informed and keep trying and pick your own endo as above and good luck.

[Therese22]

Hello onemum, I am going through the same thing. DR I deal with has got no idea what Thyroid is all about. I get told told that there is nothing wrong with my thyroid reading and to still take the 75mcg.More blood test coming Thursday. I wish there were specialist out there that can cure thyroid problem and if there is one out there in Scotland can someone please give me their contact number. FED UP.

[Hennerton in reply to Therese22]

Have sent you a message privately.

[wall]

Time Magazine has said: "Mary Shomon provides a comprehensive service for sufferers of thyroid disease.

"this lady has a twitter site and is so knowledgable in thyroid problems ... some may fine it useful to know ...

[Polaris]

I copied the post a day ago from CarolynB re. Scottish Parliament Petition for use if I need to convince my GP next time I have blood tests done and thought you might want to write to yours:

"As many of you will be aware couple of thyroid patients have successfully petitioned the Scottish parliament on effective thyroid/adrenal diagnosis and treatment. Their most recent response is from Thyroid UK medical adviser Dr Midgley. His response clearly states what many of us patients know and have experienced. He outlines the limitations of current testing and treatments (for some groups of people) and states how TSH was never intended for judging the dose a patient should be taking. This should be done by symptoms and the only blood test that is at all helpful for knowing if a patient is correctly or over treated is the free t3 test. He also states, among other things, that free T4 will be high in range or even above range in some individuals and that up to 25% of patients (according to some experts) will not benefit enough from t4 monotherapy. "

[Hidden]

Hi onemum.

Sorry to hear about your experience. Unfortunately your doctor's reaction appears to be standard.

I saw Dr Skinner privately in 2004 after four years of inconsistent response to thyroxine. He prescribed me armour but I stopped seeing him when my chemist told me that armour was no longer available. I believed them and there seemed no point travelling to Birmingam to see Dr Skinner any more.

Recently I met a patient of Dr Skinner's who was well and on armour so I went back to him. I am feeling well again. Armour costs me about £10 a week as I am on a high dose. I'm afraid Dr Skinner is the only doctor who will prescribe armour (which contains T3 and T4). It does not seem possible to get it on the NHS.

Hope you get to see Dr Skinner ... sure he will get you well. But he is not young and will be retiring soon so don't leave it too long. Good luck

[Molly1960]

Hi sorry to hear that you are feeling helpless I feel the same. I have had three doctors tell me all different opinions on my health. It makes me so angry as I know my body. I like you have just had a blood test awaiting the results. I was on 150 and they have reduced it to 125, feel depressed gaining weight and very tired. Hope things work out for you, thinking of you xxx.