Recovering?

Hi there,

Been quite unwell with anemia and possible heart problems. Am waiting for an Angiogram bur my iron levels are back to normal (for the moment). I was very breathless and thought it waa due to the anemia but although blood count OK still felt breathless. I have mild aeortic stenosis but that should not cause the breathing difficulties. Anyway I thought I ought to check some of the vitamins I was taking. I trawled the internet and found some info on Vitamin K which I had been taking along with vitamin D3. Apparently vitamin K can cause breathlessness in some people. Decided to stop taking it and increase green vegetables instead. My vitamin D3 levels are nearly optimal too so I have reduced dosage to that recommended as a maintenance dose. Breathing does seem to be improving (fingers crossed). Although I have mild aertic stenosis I decided to go ahead with replacing Levothyroxine with Cytomel. I am very conscious of how blood flow through the arteries could be compromised. Especially, as I have not had the angiogram but I cannot stand the pains in my joints and muscles any longer. So I take readings for high blood pressure, do meditation and have had private blood tests.

My doctor refuses to support me even though I have offered to pay for FT3 T3 blood tests and to buy T3 on private prescription. She is not refusing of any suspected heart problems, she refused to say why. On contacting Primary Care Trust I was told that she could request this form of treatment on a named patient basis and that I should change my GP to a more sympathetic one. My mobility is poor and I do not drive or have anyone who can drive me to a surgery on a fairly regular basis so I am a bit stuck really. As an aside, how do I find a sympathetic GP? Anyway, I have done masses of reading on the net and also read Paul Robson's excellent book so I decided to embark on change but in a very conservative way.

I cleared my system of Levo and immediately started to feel better. Was very surprised because obviously I thought I would feel worse. The 'brain fog' lifted and I felt less tired and ''overall ill' Tho' old problems with paristalsis kicked in though and I became very constipated and felt toxic. Oh well!

I started by taking 6mcgs Cytomel three times per day at 6,00am, 1.pm and 4pm. I felt like I had been reborn. I have arthritis in my lower spine and I put the severe pains I experienced down to it. Doubled 6am dose a week later. The pains have improved, not dramatically but enough to make the difference between crying because of pain and frustration and having a constant smile on my face. I am certainly more active. My heart rate has not increased and neither did I have any arrhythmia. Some days I woke up late and took first dose too late and felt a bit yucky. Three weeks later I have raised dosage to 18.5mcgs at 6am, 12.5mgs at 12noon and 6mgs still at 4.00pm. Wow, I think the greatest thing is that I feel happier and I do not feel so hungry. My body temperature is still a bit varied and tends to drop at night.

Not sure what the future holds really. Hope things keep improving. I know I will never be truly well but I do want to be more productive than I have been. It is all looking good though. I have just volunteered to co-ordinate a children's biscuit decoration and cake baking competition followed by a Tea party of Vintage Elegance (not shabby chic which is most passe). 'What fun.'

Next step is to up my T3 intake in two weeks time. I plan to take 25mcgs at 6.00am and 12.5 mcgs at 12.30 and 4.00 pm respectively. That will bring me up to 50mcgs daily and then another private T3/FT3 test.

Still reading about various bits of hypothyroid research with a view to re-entering the research field. Came across this and although I am sure it has been mentioned before I will post the link. According to Mary Shannon, hypothyroid patient advocate and campaigner. the participants are patients from the military or their beneficiaries. The study description does not make this clear but the study is being conducted at a military medical centre and they are recruiting patients, so I guess there is a military bias. Hm! not exactly a representative sample of the population and confounds the study design for other reasons such as participant compliance. We all know the military are trained to comply with orders!

Still good to see some attempt at comparison and if all things are equal and patient compliance plays a part then both treatments will be equally as good (or bad depending how bitter the patients are).

Desiccated Thyroid Extract and Levothyroxine for Hypothyroidism Treatment. Walter Reed National Military Medical Center, November 2012

clinicaltrialsfeeds.org/cli...

Bye y'all

9 Replies

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  • Glad to hear you are starting to feel better. I was a bit like you in that the brain fog and joint pain reduced almost immediately on stopping levo. It has been a long time getting from there to where I am now, but not as long as for some people. My heart rate only increased minimally until this latest increase where it has now hit 56bpm which is positively racing compared with what I'm used to! Arrhythmia has improved to and mood and skin and just about everything else. I am on NDT rather than T3, but I feel that levo was like poison to me. It sounds like it was the same for you too!

    I hope you keep improving. It's good to hear success stories to give everyone hope. Please let us know how you get on with the next increase and I hope you find a sympathetic doctor soon! The do exist, apparently ;)

    Carolyn x

  • Thanks Carolyn I have all you lovely people to thank really. Without all your help and support I would still be the quivering wreck I was two years ago. I still have a long way to go. I am overweight and it needs to shift for my health's sake. I have lost confidence and my eyesight is poor but I can deal with these problems. I could not deal with feeling stupid. Memory loss, thinking in circles, finding it hard to problem solve, losing track of goals and aspirations and not being able to attend to information have been the most diabolical symptoms. My daughter thought I had turned into a pathological liar but I just kept miss-remembering things. Now where did I put that bit of chocolate cake!

    Regards

    Lin

  • Thanks for your story which will be uplifting to some who are having the similar problems as yourself.

    I never had painful joints/muscles or heart problems until I took levothyroxine and had many ECG's and a 4 day heart monitor and was given all clear. All disappered when I switched from levo.

  • This an archived link re Heart and Hypothyroidism.

    web.archive.org/web/2010122...

  • Thanks Shaws. I have faith in the fact that if you give your body time to adjust to T3 and follow a Circadian method then it has to be an improvement on T4. I also agree that hypothyroidism probably caused my 'heart murmur'. My doctor has been wrong about so much that I am not listening to her about the heart stuff.

    Regards

    Lin

  • Hi You are right about the Vit K , also more importantly it can effect the clotting of the blood. Even if not on Warfarrin it is not a good idea to ever do anything to effect clotting time.More import than the Angiogram, have you had an echo,? it can show lots f things but I am thinking mainly of Mitral valve regurgitation. ( It can be treated ). Also for any cardiac diagnosis the most important test is a 24 hour ( or better still) home monitor. It takes mini ECG`s all the time so, gives a good picture of what is happening. The same as being on a permanent monitor in hospital.Have you had a calcium blood test (very basic)?-This is most important as taking Vit D ( Hormonal). If Calcium is above range, to take vit D is extremely dangerous ,even if it is very low.Surely your Rheumy tested for these?I hope this helps . Make sure you see a really good cardiologist from a large teaching hospital.

    I use on line tests, very useful with an inadequate GP. make sure the Lab is well known or some docs will not treat on their results.

    Best wishes,

    Jackie

  • hi jackie,

    I have had an echo cardiogramand and 12 ecg kead tests.The next thing is to have exercise test, 24 hour obs angiogram which is very iimportant because of stenosis.

    I take Vit D3 due to osteomalacia and it was recommended that I take Vit K\by a nutritionalist who supports mein the decision. My calcium levelsare fine and there is no sign of hyperparathyroidism.

    I attend the Royalsussex and am in touch withthe head of the cardo dept. Used to do research there.

    I am worried about possible pernicious anemia\though because I do not undeerstnd it. Any advice?

    Thanks for your observations but pretty sertain there is no evidence of mitra valve regurge at the moment.

    Regards

    Lin

  • Lin, Glad you are being well looked after. There is an excellent article in the latest "Harmonly " mag. TUK, just out. I could not do better. Symptoms are unfortunately like lots of other conditions. It is autoimmune causes extreme tiredness, like tots of things. Have you also been checked for diabetes? Goes with heart and thyroid and is ,of course, hormonal and auto immune. It is usually only tested with one test + Folic, which I understand is not the best test and also low in range is bad but not normally treated!I have severe osteoporosis but cannot take vit D because of my high calcium so, that is good for you. It does take quite a while to work and normally one is always on it. Unless like me you have to stop. I actually get osteomalacia,(adult rickets) from low D but no option.

    I hope things improve for you. Make sure you get to the bottom of it as harder when one condition well known!I always have to self diagnose as so complicated and so much wrong.Consultants think it is a joke but I am not laughing!!

  • Sounds very simIlar to my current situation. I feel very reassured by your blog and hope that you are finally on the road to recovery. I am gradually getting through reading Paul Robinson's book at the moment with a view to trying the CT3M he talks about. The four doctors & two endo's I have seen over the years will not consider anything other than levothyroxine for me despite me continually telling them that it makes me feel ill. I can only find higher dose tablets of T3 on the Internet, can you pm me with the name of your supplier? Thank you and all the best.

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