lila210 years ago

Hi,I was diagnosed a year ago and am only now getting better, someone said to me it takes time to get so ill and it will take time to get better. My advice to you is to read as much as you can and ask as many question as you can until you begin to understand what is happening to you. I wrote down my previous history current symptoms lifestyle medications and questions and handed it to gp who then took me seriously, you need to look at vit d and b12 both of which play a big part and you will not feel better until these are at optimal levels, I have a folder which I take to my gp to discuss my symptoms.lastly you need your blood results and ref ranges, your blood tests are legally yours and you cannot be refused them, if you do not get anywhere ditch the gp and move on to the next one until you get somewhere.

Good luck and keep asking questions x

Tats in reply to lila210 years ago

Thanks lila2 for the good advice I will certainly organise myself before I see my GP again.

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nostoneunturned10 years ago

I am sorry you are in such a state. It will be necessary to quote your results with the reference ranges also, and lila2 has given you great advice. You cannot be refused copies of all tests so please do not let anybody put you off getting them. Never, ever, accept a doctor telling you test are normal. It is also preferable to ask the doctor for copies of test results.

Until you can post these results it is difficult to advise you but one thing stands out, you say you are on 50mcg levothyroxine. This is an exceptionally low dose, just a starter dose, and you should have had a blood test after 5 weeks or so and had your starter dose titrated upwards using the disappearance of symptoms as a gauge. Do not describe your symptoms as "minor" when you can barely walk upstairs. Please go back to the GP, or another one, and tell them all you are going through, preferably having taken lila2's excellent advice about doing this in an organised way.

In hypothyroidism stomach acid can be affected so leading to poor absorption so leading to low levels of B12, folate, ferritin, and Vit D. These should all be tested, here are the optimal levels:

Vit D 125-175nmol/L, or 50-70ng/ml.

Ferritin Around, or more than, 90mcg/L

B12 A minimum of 500ng/L, but more is better,

Folate Around 12mcg/L, depending on the range.

Your ferritin sounds very low on the scant information given, the optimal is usually around 90mcg/L but we do need to know the range to be accurate. Your GP should start treating your low level of ferritin, which is the storage iron.

In order to start learning about hypothyroidism please would you go to the main site at:

thyroiduk.org

and start reading all the info there. Also please buy, at most chemists or from Amazon, Dr Toft's little £5 book "Understanding Thyroid Disorders". Dr Toft was President of the British Thyroid Association and President of the Royal College of Physicians of Edinburgh and it would be a foolhardy GP who argued with the information in this book which sets out most succinctly the basics and more, regarding thyroid problems.

Please realise some doctors know little about thyroid issues, but you can get help here, so insist on having copies given you of all results then come back here and post them with the vital reference ranges.

We certainly wish you all the best and by coming to this forum you have taken the first steps to changing your life for the better.

Tats in reply to nostoneunturned10 years ago

Thanks nostoneunturned. I will ask my GP for the blood test results when I see him next week and will publish them here. I have read a bit about the thyroid but have found it somewhat confusing - maybe my fuzzy thinking but will try the main site. My minor symptoms are dry skin and hair and constipation which are a menace but I can cope with. The other symptoms are making every day a challenge! I will certainly buy Dr Toft's book as you have advised.

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tingles in reply to nostoneunturned10 years ago

Fabulous answer!

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Hidden10 years ago

Agree with above excellent posts.

I know nothing of cardiac problems just have read up a bit on Thyroid ones,

as for aches & pains Vitamin D made a big difference to my wrist/elbow/ribcage pain - but that was only my experience (OK others have reported similar here). You should get your calcium levels checked too, the importance of Vitamins and minerals should not be ignored as they go hand in hand with Thyroid problems.

"My daily medication is levothyroxine 50mg, verapamil 80mg, simvastatin 50gm, lansoprazole 30mg and domperidone."

We are not medically qualified here just fellow sufferers (and I'm not even treated) But...agree that seems a small dose of Levo after 8 months.

domperidone affects the pituitary which signals the Thyroid to produce hormone, lansoprazole can affect stomach absorbtion,

statins, for high cholesterol? this tends to be high in untreated thyroid sufferers,

verapamil - I wouldn't comment or assume to know anything about this.

You have the right to see your records or even just your last blood test printout.

You have the right to change your GP or ask to see a specialist.

Best wishes Jane

Tats in reply to Hidden10 years ago

Hi Jane

I did ask my GP to test for vitamins but she said there was no need. I will try again next time when I get my other results. If the answer is still the same I'll have to look for another GP. Interestingly you say cholesterol can be high in untreated thyroid sufferers. This does make sense as my high cholesterol was noticed about a year before the thyroid problem was diagnosed and I know I had the thyroid symptoms for at least a year before that.

Thanks to eveyone for the advice. I feel I know what I need to do now. It's great to know I'm not on my own.

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Hidden in reply to Tats10 years ago

here's a search of posts about cholesterol

thyroiduk.healthunlocked.co...

you can type a word in the search box or look on tags too.

or visit the main site TUK for more info

thyroiduk.org.uk/tuk/index....

sadly often docs ignore vitamins/minerals. no - not on your own here! J x

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Tats in reply to Hidden10 years ago

Thanks for the advice. I'll check the posts out. x

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Stourie in reply to Tats10 years ago

Just a wee note. When I was diagnosed hypothyroid 6 years ago my cholesterol was 14.85 and went down naturally when I started on levo and had it upped every 6 or so weeks. After about 5 months it was down to 4.6 without any statins.

Jo xx

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Tats in reply to Stourie10 years ago

Hi Jo

I'm hoping for the same with my cholesterol lowering naturally - just need to get the blood test done as the GP didn't request it this time. xx

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galathea10 years ago

Statins... are contra indicated with thyroid meds, because of the likelihood that they they will cause muscle and joint pain which does not resolve when the statins are stopped.... see: ncbi.nlm.nih.gov/pmc/articl...

High cholesterol is a symptom of hypothyroidism.. indeed before the shoddy tsh test, it was one of the ways that hypothyroidism was diagnosed.

I had problems with dead arms and pain with exercise..... but it was found to be mainly attributable to exercise induced asthma.... which the doctor managed to miss for 4 years. I thought I could breathe alright but it seems that asthma means you can breathe in, but not out all the way. When you are trying some exercise, try emptying your lungs... if you wheeze or cough ask the doc to refer you for a methacholine challenge test.....

The ferritin is shocking and needs to be increased immediately. Don't take iron anywhere near thyroid meds. you probably shouldn't be taking lanzoprazole.. low stomach acid is more likely..... see here: drmyhill.co.uk/wiki/Hypochl...

Then 50 mcg is a piffling amount of thyroid meds..... you should be tested every couple of months or so and the dose increased until you feel better and the tsh is below 1, with the free t4 at the top of or just over range...

G xx

Tats in reply to galathea10 years ago

Thanks for the links -they make interesting reading. i have asked my GP about the statins as my last prescription was altered from simvastatin to atorvastatin without consultation but as I have not yet had an answer I have not been taking them for a couple of weeks .... I feel another question coming! The lanzoprazole and domperidone were prescribed by the cardiologist for a trial period as he thinks my chest pains may be due to a stomach problem (which is not so but I was so exhausted and tired of trying to explain how I was feeling I gave up and took the medication). I feel a bit stupid writing this as I should have stood up to him. Anyway I'm seeing him this week so I'll woman up and tell him!

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Hidden in reply to Tats10 years ago

Please, please don't feel stupid writing anything. We all know how disabling this illness is. I consider myself a normally feisty woman, but have frequently found myself completely overwhelmed by people and situations that I would have taken in my stride when well.

Above all remember that you can feel safe asking questions and airing your feelings on this site.

Sue

x

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Tats in reply to Hidden10 years ago

Thank you for your encouraging comment. x

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nostoneunturned in reply to Tats10 years ago

Hi, Tats, ignore that cardiologist's running advice -check out this link, it has good tips on many aspects in addition to aerobic exercise. Just walking helps convert T4 to T3 - but you have not even got enough T4 to start with, so do not force any walking, just do what you can at the moment.

thyroid-info.com/articles/r...

Avoid fluoride in toothpastes, use Euthymol, it is fluoride free; no fluoride treatments at dentists; avoid non-stick pots; check your drinking water, ask water supplier if fluoride is added if you do not know. Don't even think of taking supplemental iodine and check any all-round vitamin/mineral supplements, ditch any with iodine in the contents list; avoid kelp.

You WILL get better. I have been badly treated in the past, could not walk uphill/stairs owing to burning muscles, feet would not work, mouth muscles all stiff in morning so spoke with difficulty, deaf, exhausted, high cholesterol, etc., etc., just like you but all that is gone now. Courage, sister!!

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Marz10 years ago

Having read through all the excellent posts - think I'm right in saying that T3 has not been mentioned. It could be that it is low or that the little T4 you are taking is not converting into T3. T3 is the most active of the thyroid hormones and required in trillions of cells in the body for a healthy metabolism - including the heart. It seems difficult in the UK to obtain this test - but do try and persuade your GP - having read up on the reasons before. It could be just the difference you are looking for in this Thyroid Puzzle. T3 also needs to be in the top third of the range when you have your blood results.

So much reading - at a time when you are feeling low - but it feels so good when eventually you read something that fits another piece of the puzzle. Will look out for your posts and hope that all goes well with your GP and Cardio man.

You will soon feel better I am sure.

Tats in reply to Marz10 years ago

Thanks I will add this to my list of questions for my GP. I like your description of thyroid being a puzzle. I think of my medical problem being a jigsaw puzzle with pieces that sometimes change shape!

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JoanofArc10 years ago

Hi Tats,

Sorry to hear you are feeling so awful.I am not medically qualified but wanted to share my opinion for what it's worth. You are clearly hypothyroid and suffering the ill effects of poor treatment albeit inappropriate treatment. A replacement dose of 50mcg of thyroxine is most likely woefully inadequate for you. It is the equivalent of a 'starting' dose and having been diagnosed 8 months ago I would have thought this would have been increased by now. Just because your thyroid results have been deemed 'normal' doesn't mean they are actually are. A ferritin level of 4 is dire. Many Hypothyroids are iron deficient and it is more than likely due to your low thyroid status.An anaemia of chronic disease so to speak....

I can't comment on the other medications you are taking but I would question if any of them are necessary ? If you were properly treated would these need to be prescribed at all? I am also concerned if your Cardiologist suggests you run 2 miles a day. I do not have a link but remember reading an excerpt by Dr Barry Peatfield. He vehemently advises against marathon running and challenging cardiovascular exercise.It puts far too much strain on the body and especially those in a hypothyroid state where the heart is struggling already to maintain homeostasis.Andrew Marr(political commentator) is a keen marathon runner and was felled by a stroke 12 days ago and he had no thyroid issues as far as I'm aware.

Anyway, do post your blood results and let us know how you got on at your appointment.

Regards Joan

Tats in reply to JoanofArc10 years ago

Thanks for your reply Joan. I can only just about walk at the moment so running would not be an option - my heels are so sore. I will post on Friday after my appointments this week.

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marram10 years ago

Hi there Tats.

First of all, let me say that I am not a doctor as indeed very, very few of us have any medical training. What we do have is many years (combined and individually) of experience of thyroid disorders and the treatment - or not - of those disorders.

Seems to me that most of the medication you are on is being used to treat the symptoms of hypothyroidism, instead of addressing the actual problem, i.e. replacement of the thyroid hormone. At the moment that is the first port of call, increasing the thyroxine level. After that, if it does not do the trick, than start looking for something else. That TSH is well out of range (DR Toft's book, 'Understanding Thyroid Disorders', page 88, tells you the kind of figure the doctor should be aiming at - and it is below 1, much, much lower than yours!) If you have or can get a copy of that book and then you can actually show the doctor (respectfully, of course, to avoid ill-feeling) if he is in any doubt.

To sum up, I would say your no 1 priority is to address the low thyroid level first. If you are treated with the correct dose of levothyroxine, you could well be among the ones who respond to this and you will not need to look any further, you will gradually recover. It is true that many people on this website have not responded to levothyroxine but many do. The dose you are on is so very low that it is too small to assume you are not converting to T3 or anything else - that is why I would suggest first of all increasing the levothyroxine and see how you get on. It has to be done gradually (over a few months) to avoid too much of a shock to the body.

I worry that you are on statins and are having chest pain. You have probably been put on statins because your cholesterol is high which is fairly likely to be caused by your hypothyroidism being undertreated. Chest pains are known with simvastatin because that particular statin is known to cause that in 'some' people but all statins are not particularly good for someone with hypothyroidism as they will make the tiredness and inability to move even worse. If you read the Patient Information leaflet it clearly states:

• Verapamil and diltiazem (medicine used

to treat high blood pressure, chest pain

associated with heart disease, or other heart

conditions). If you take Verapamil the dose of

simvastatin should not exceed 20 mg daily,

Take special care with Simvastatin:

• if any of the following applies to you, as you

may have a greater risk of muscle breakdown:

- you are more than 70 years old

- you have kidney problems

- you have thyroid problems (and are not

taking medicine for it)

I became so ill with statins that I flatly refused to take them any more, last test my cholesterol was 9.7 but the doc then admitted that most of it was 'good' cholesterol and since my arteries were clear I had little risk of a heart attack.

(Since I have been on an increased dose of levo I am starting to feel better and what I am desperately hoping is that my cholesterol is reducing with the increase of thyroxine. )

Marie XX

Tats in reply to marram10 years ago

Hi Marie

I have stopped the statins at the moment but need a cholesterol test to see how I'm doing. I agree that I'm being treated for individual symptoms rather than me as a person. Incidentally I did have the chest pain problems before I was prescribed statins but I'm now thinking they may have been part of the thyroid problem.

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marram in reply to Tats10 years ago

I suspect the cholesterol will not come down until you are optimally treated for the thyroid problem. I was on 150mcg Levo for 27 or more years, held down a job, looked after my sick mother and my son (single parent), cooked, cleaned, and still found time and energy to study. at 60 I had a BUPA health check as a condition of continuing to work. Clean bill of health - cholesterol 4.7.

I moved home and changed doctor who told me I was on too much levo and reduced it to 100. Within a year my cholesterol was 9.7, I had heart valve problems, several TIAs and total exhaustion. I was put on statins and clopidogrel and was told it was my age! (Is it actually normal to age 20 years in 12 months??) I now have an enlarged heart as well. Does it take a genius to make the connection? Well, apparently so, because my doctor can't.

I am sure you are right about the chest pains, they are part and parcel of the thyroid problem, that's why statins are not a good idea for hypothyroid patients. I really do hope you can get the thyroid stabilised.

Marie XX

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Hidden10 years ago

I felt so sorry for you when I read your post, I have been feeling the same after being diagnosed since 1999

I ended up leaving my job, selling my house .

Intitally, I was put on 100mgs levo, by the Encologist, and for years managed well on 125mg.

Since july'12 I was told my tests showed too much levo so was put down to 75mg and 100 alternate days. Nightmare..

This last couple of months I have swollen face and joints, sleep more than I need , and find it difficult to concentrate.

Blood Tests so far have shown 'no more' action for certain body functions.

And Ive now had a biopsy taken from my womb.

Menopause has kicked in and Im wondering what is the 'point' sometimes.

Luckily I have a support system with family and friends, problem is trying to explain it to work collegues etc.

I have slept through alarms to wake me in the mornings at 5, I work in a shop.

But I know you will be ok, as you have found this site, as its helped me to cope better too xx

Tats in reply to Hidden10 years ago

Hi and thanks for replying. I too appreciate finding this site as no-one other than fellow sufferers seem to understand just how horrible this illness is.

I am putting my house up for sale in a couple of weeks because I can't have the worry of not being able to meet the mortgage payments if/when I have to finish work. At the moment i can't see myself continuing beyond this summer. The cold weather this winter has seemed to contribute to my symptoms.

I thought I was at the beginning of the menopause as my periods had stopped for a number of months but when I started on the levo my periods came back albeit every other month - very painful and heavy but I do have fibroids!

I do agree that I'll get through this and it now feels better as I'm not on my own. xx

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tavy10 years ago

I am so sorry and empathise with you. I too have been on the tread mill with the cardiologist, they found nothing wrong, ecg machine for 4 days and heart moniter for a 4 day period. still feel ill constantly and catch everythin going. no energy and yes Im holding onto my job with special needs students by the skin of my teeth. its horrid isnt it to be feeling so damn usless. sorry Im not feeling very possitive today either. flu virous since Boxing day, migraines, feeling my ears are blocked and very dizzy, week off with menieres before Christmas. I do hope they find a way of helping you

Take care best wishes

Tats in reply to tavy10 years ago

Thanks for your reply. The cardiac syndrome x is what they diagnosed for me when they eliminated other heart conditions - there's no evidence that I have this. I'm lucky because I don't usually catch any bugs going around and i too work in a school where the fast pace is often beating me. And yes it is horrible to feel like this when I loved my job and have always given 100%. The problem is now I'm still giving 100% but it's coming out somewhere way below that figure! I hope you get over the bugs you have caught and soon feel more positive. x

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Hidden10 years ago

You sound as if you are being under-treated. 50mcg is a very small dose. Statins are not good idea for lots of people, especially those with hypothyroidism. Doctors generally haven't a clue and that shockingly includes endocrinologists. I suggest you read Dr Barry Durrant Peatfield's book Your Thyroid and How to Keep it Healthy. You need to be very well informed to do battle to get the treatment you need.

Tats in reply to Hidden10 years ago

Thanks Chillyfeet. i will check out this book.

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Hidden10 years ago

Hello Tats

Sorry to hear that you are struggling at the moment. Your latest blood test when you get the results might explain.

I would like to ask you what is Cardiac Syndrome X as I've been having having mysterious back/chest tightening radiating up to my jaw a few times lately. It seems to be mostly in the night and wakes me up and usually during or just after a migraine. Although I did have one after a a long, hard day, again when I was at rest.

Went to my doctor and she did an ECG, cholesterol, blood pressure & chest x-ray. All came back normal and suggested it might be a side effect of the sumatriptan I was taking for migraine. It constricts the blood vessels. I stopped the sumatriptan and I still had another one.

Could I have this Cardiiac X do you think? My doctor didn't mention it and I'm not going back to her.

I think migraine is a vasular condition and was wondering if you get them too, and are they connected.

It's awful that we have to be our own doctors and try & work things out for ourselves. I found my doctor not much help at all.

Flo B

Tats in reply to Hidden10 years ago

Hi Flo

I get angina like symptoms on exertion. I don't have any sypmtoms if I'm sitting down and I don't have migraine. This was put forward to me as a last resort as I was thankfully cleared of more serious heart conditions. If you are still experiencing pain you should go back to your GP. x

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ednamary in reply to Hidden10 years ago

I have suffered with acid reflux for several years the bad episodes start with a slight toothache which rapidly becomes excrutaiting pain in my jaw() feels as though I have been hit around head with a cricket bat). which then radiates to my chest apparently this mimics a heart attack the consultant I saw sent me for heart checks etc to rule heart problems out. I have only been diagnosed hypothyroid about a year but since finding this site reckon I have suffered with symptoms for quite a few years.. I was taking esamaprazole for the reflux but have recently stopped this as I think it was affecting the absorbtion of minerals etc. as I have been feeling rubbish for a while have blood tests tomorrow. maybe this is similar pain that you are getting.

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Hidden10 years ago

Fascinating reading and excellent responses - I've learnt so much - many thanks.

I'd like to add, re exercise, high impact exercise (running) is also not a good idea as it could put strain on joints as well as damage weak muscles. I used to dance and skip to keep fit. When I became hypothyroid I became too ill to do anything and my muscles became very weak. After treatment with levo, it's taken me almost a year to recover. During this time I treated my muscles/joints with the utmost care as I began to regain muscle well-being. I find exercise is good - but gentle and in small amounts. I began with a couple of minutes on the cross-trainer (totally supported, no impact) and at first, even this triggered cramps. I'm much fitter now - but I took it really slow and it's now nearly a year on from diagnosis.

Good luck.

Tats in reply to Hidden10 years ago

Hi and thanks for replying. Yes I agree that the responses are very interesting. It's amazing how much I've learnt after just one post.

Exercise is out of the question for me at the moment as I can just about get by each day walking to the car then into my office. I can't carry bags from shops to the car as I'm too weak. I was a very capable woman a few years ago and would tackle anything that was needed - moving furniture, heavy garden work, etc. I do believe that when my medication is worked out correctly I will be able to start exercising slowly as you suggest and get some form of fitness back. Can't wait for that day! x

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Hidden in reply to Tats10 years ago

Tats thank you for replying. I was EXACTLY the same a year ago so don't lose hope! I also could barely walk and was finding stairs difficult. In the morning, my feet wouldn't work at all for about five minutes. And like you I had been very active. I didn't think I'd ever recover.

Recovery has taken almost a year - but I feel amazing now. I agree - when your meds are correct AND when you've had time to recover you should be able to exercise again.

I also looked at nutrition - what's been written here about vitamins is really interesting. I also made sure I cooked cabbage, broccoli, & cauliflower to beyond the crunch and I've eradicated all soya products from my diet - including soya hidden in bread etc.

Wishing you a better 2013! x

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sorrel8910 years ago

Hi there Tats...I joined this group 4 days ago and I am absolutely astounded that so many people have been ignored, neglected, rejected and obstructed in their quest to feel 'normal' so many have suffered in such silence me included.

My Ferritin levels were 6.2 this time last year and the GP's and medics had not informed me that they had been very low for 10 years...that is with having a GP, Endocrinologist and a Consultant in Nuclear Medicine 'looking after' me....to this day they still do not not communicate with each other and had completely neglected the Ferritin issue until I literally had a sit down protest .... after recurrent visits to the GP's. (following on from diagnosis of papillary Ca 23 years ago). I have been signed off work now for 10 months with complete fatigue, brain fog inability to concentrate and walking upstairs is a tricky one...the GP thought it was post viral fatigue....you are not alone.... All the medics I have come across seam to negate the raised stomach hydrochloric acid issue. In caution they wanted to rule out a further tumour somewhere so embarked on the most intrusive investigations over the last 10 months ... barium ememas, sigmoidoscopy, a gastroscopy, brain scan, body scan .....only to find absolutely nothing. In September my Ferritin was 22.4 ....still very low and was again astounded that the medics did not request Ferritin lab test for my 3 monthly blood check... they did not feel it was required! I stopped taking the prescribed Ferrous furmarate because of the side effects. I was getting nowhere with the medics so decided to take my own path etc and have been under a medical herbalist and homeopath to boost my iron and ferritin levels and to support adrenal function and immune system.

As mentioned in many of the previous excellent responses levo and iron should not be taken together and also eat a diet rich in vit C, D3, selenium and all the vitB's ....make sure they also check your FreeT4 and FreeT3 not just TSH.....I requested lab tests in reverse T3 but my endo said they will not test for this unless for research purposes...I said use me for research purposes!!!...there was no comment.

Alcohol and Tanins in tea can drain your iron and ferritin levels. Avoid other stimulants like coffee and invest in a very good pre/probiotic with 20 Billion or so bacterium...essential fatty acids, lots of nuts and seeds and reduce sugar..that is toxic that also leads to being in a hypoxic state...little oxygen in the blood......You have to become your own advocate and stand up for yourself....as I feel the medics actually have very limited knowlegde of the collective endocrine system ...they are territorial and can be obstructive .....hope this is useful... really feel for you...it is going to take a while to boost your ferritin levels so be prepared that being signed off might have to be an option in looking after 'you'....take good care..x

Tats in reply to sorrel8910 years ago

Thanks for all the advice. I do need to change my diet and will read up on what to eat. I had been on a 1200calorie per day diet just to maintain my weight after gaining over 2 stone but my doctor sent me to a dietitian who said I wasn't eating enough and gave me a 1500calorie per day diet. After 3 weeks on the diet I had gained 2lb so back to the drawing board.

i am encouraged by your experience. Many thanks. x

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jb128 in reply to Tats10 years ago

Hi

A lot of great advice given here.

Re diet you will need to go gluten & wheat free & possibly dairy free ( can test for this to be sure) which will help with weight loss & the thyroid issues.

Eat oily fish eg salmon, sardines, for the omega 3 which helps with inflammation.

Forget statins there is plenty of research on how bad they are despite what medics continue to say.

If you can tolerate nuts , 8 almonds a day will lower your cholesterol ,even a dietician told me this. Flax seed ( can start with 1 tablespoon) will help with the constipation, this can be used on cereals in smoothies or shakes etc. You can do this work up to 3 times a day just see how you feel.

There are some doctors now recognising the importance of gluten sensitvity in the diet. Also check Dr Kharzian's website he gives some of the basics & what foods to avoid.

Another thought to consider, do you have any amalgam fillings as there has been alot of research on mercury poisoning the system from these fillings and causing immense fatigue/tirednedss, MS conditions etc. If you do i would suggest removing them and replacing with composites or glass/porcelain.

Hope you feel better soon.

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Janinit10 years ago

Hi Tats, I am not a doctor but I understand where you are coming from as I had the exact same angina symptoms 18 months ago and I am sure they were caused by inadequate thyroid medication 100mcgs. I went for various tests cardiac and high blood pressure over thirteen years since RAI treatment for thyrotoxicosis and was continually told that i had nothing to worry about as nothing serious showed up in the tests. This culminated in me having an overnight stay 18 months ago in the local hospital with suspected heart attack. Just before that one of the GPs in the surgery had called me in to increase my thyroxine as she thought that I was a bit low and arranged for me to see an NHS endochrinologist which required me to travel 234 miles to get t3 which I thought might help my ongoing chronic fatigue symptoms (that is putting it mildly) I am now on combined T4 and T3 medication which my endo told me equals the equivalent of 175 mcgs of t4.( I had up to that been on 100/125mcgs of t4 for years) I was also referred to the cardiologist in the main hospital in my own area and given an angiogram which showed clear arteries. He reassured me that I would not die with a heart attack and thought that i might have microvascular angina. I am now feeling more like my old self due to the increase in thyroxine but accept that I may never get my full health back. I am angry at myself for not being more demanding. My advice to you is to go back to your doctor and demand a copy of your blood results that is your right (freedom of information act) in fact you can arrange with your practice manager to see all of your notes . You can post your blood results on this site for comments and advice. I hope that your cardiologist has given you something like GTN to be used if you need it when you have symptoms. Forget the running until your medication is sorted and you feel better. Your blood results are only right when your symptoms are right. My TSH at my last test was 0.02 and my endo and myself were quite happy with that.... Good luck and hoping you get thing sorted soon..xx

Tats in reply to Janinit10 years ago

Hi Janinit

Thanks for your reply. I will be requesting my full results and will post them here later this week. I understand you being angry at not being more demanding but when we're feeling so run down it's difficult to rise to a challenge. I certainly feel empowered to ask more questions as I've learnt so much from you and the other helpful posts. Ta x

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LoMo110 years ago

It took me 12 yrs to find a Dr. that new what I was talking about re; hormones.My TSH, etc lab values were coming back "normal", but was having severe thyroid symptoms. The last physician I saw was intelligent enough to order a thyroid ultrasound, which revealed thyroid nodules. I told him I only wanted naturals for my hormone condition. He agreed and stated that is the only thing he prescribes. He started me on a low dose of Armor Thyroid for 6 weeks, then return to office for a follow up. The first dose I noticed improvement with my hearing (nodules (swelling) was preventing me from turning my head and neck), my vision. He asked me how I felt and told him of the improvement, but that I wanted to feel better. He increased my dosage to 60mg daily and a return to office in 6 weeks. It continued until he stopped me at 120mg daily, but I knew I could feel even better as I once did. So, I continued increasing the daily dose up to 180mg daily which I take now. Also, I had him start me on female hormones which made a world of difference, too. Remember, one hormone affects another. You can't attempt to correct one hormone imbalance without correcting the others...they work as a system.

Tats in reply to LoMo110 years ago

Hi LoMo

I do think I need to find a Dr who will be able to sort out the whole puzzle not just the one TSH level. I think I'm still at the beginning of a long journey. I haven't even had a physical examination by my GP even though I have a swelling. Thanks for your post.

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cloud110 years ago

Sorry to hear ur such poor health.I must say that i think urcardiolpgists exercise advice is absurd and ignorant if ur situation.As others hav saieed build up v slow(being hypo).I was just wonderedif u hav cnsidered natural supplements ;such as co enzyme q10(capsule form)as i take this and think helps energy in muscles.other ones are suggested on Dr Sinatra website if u want more info.

Tats in reply to cloud110 years ago

Hi Cloud

I will be asking about natural supplements and would like to find a decent practitioner in the North West. Will look at the website you said.

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editfmrt10 years ago

I have trouble finding the words to convey how angry and frustrated it makes me feel when I read so many posts from people who have been sent to heart and respiratory specialists (amongst others) to investigate symptoms that so frequently relate to poorly treated or undiagnosed hypothyroidism. The worst thing is they then go on treat these symptoms with medication that adds to the problems and cause more symptoms from the side effects - all without actually identifying a cause.

The cost in both human and financial terms must be astronomical. You have been given so much super advice in these responses that I don't have much to add other than to mention your breathlessness.

A few months ago I started to get breathlessness too. I have been taking 125mcg thyroxine for many years and reasonably well on this, so initially it didn't twig it could be a thyroid problem. I made one of my exceedingly rare visits to the GP because I was having trouble even climbing a short flight of stairs and I'd had this for some months. i was diagnosed with asthma and COPD.

None of this rang true with me and realising I had been extra tired too, I decided to increase my thyroxine to 150mcg. Within a couple of weeks my breathing was so much better and has continued to improve. I have made no other changes and take no other medication and am reasonably symptom free, so don't have a complex case to unravel. This small increase in thyroxine is the only explanation for my improved breathing.

Breathing is affected by low thyroid because the lack of hormone weakens muscles. The intercostal muscles and diaphragm control the lung function. Therefore weak muscles = poor lung function = breathlessness. Low iron also causes breathlessness as the red blood cells can't carry oxygen so well. Basic stuff they should understand and know how to treat.

I'm so glad you have found this site and wish you all the best on your journey to better health. Xx

Tats in reply to editfmrt10 years ago

Thanks so much for your post it really does make sense. My GP initially tried to tell me it was asthma which I dismissed then he tried to tell me I was depressed. He even said he knew I was depressed and I was hiding it well. I immediately found a new GP who on my first visit sent me for blood tests for thyroid. Unfortunately he now doesn't seem to know what to do with me! I do believe I'll get much better as soon as I take control. xx

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editfmrt in reply to Tats10 years ago

Hiding it well! I've heard it all now. The arrogance is staggering.

Good on you for doing something about it and changing GPs. Shame the new one doesn't know what to do but at least you got the diagnosis through him so he has at least served one useful purpose.

It warms my heart to hear your last sentence - I am sure you will do well with taking control.

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skyfall10 years ago

Classic!

In my book your symptoms sound like they're could well be due to low ferritin.

I had a ferritin level 10-15 and felt shocking. This was in Australia. There they treat anything under 70 with an iron infusion. I had this via referall from GP no questions asked. Everything fine after 2 weeks - felt human again.

Returned to the UK, watched my ferritin levels drop over time (don't absorb it well from diet, not a vegetarian, took supplements). When it dropped to 32 and was staring to feel dodgy again resquested GP for iron infusion. He baulked but to his credit checked with a haemotologist at the hospital who agreed it was way too low. He infused me (15 minute painless procedure). 3 weeks later back to normal. Now seeing haemotologist every 3 months to monitor ferritin and yes it's slowly depleting again. Specialist said it's been noted that reduced ferritin makes you feel rubbish, although apparently no-one's sure why.

Your symptoms: painful joints, breathlessness are the same ones I had with low iron stores.

I'd be questioning diagnosis of 'cardiac syndrome' unless you have clear medical test results that indicate it. If there's any way of getting off statins (ie. if you had no clear medical reason for taking them - eg. high blood pressure, high cholesterol, clear diagnosis of angina) avoid them. They're bad for your liver and digestion and can have quite nasty side effects over time.

My advice - for what it's worth - stick to sorting out your ferritin levels. Also worth checking B12 levels as these two seem to go hand in hand...and make you feel awful.

Good luck... hope you feel better!

Tats in reply to skyfall10 years ago

Thanks for your post. I will be taking your advice and making the ferritin level my priority then looking at various vitamin levels including B12. I actually feel a bit better today as I've learnt so much and knowledge is power! x

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Jan4910 years ago

The Dr Toft book is a good handy reference book to show your gp when you ask for an increase of Levo. It gives a typical TSH as 0.2 and is difficult to argue with as it's a BMA Family Doctor book. It also says that thyroid blood tests should not be taken in isolation. Do take the advice about vitamins etc and if you don't want to change doc, he did diagnose you and some don't even do that, it's possible to get private tests done for ferritin etc. I hope you feel much better soon, it's unfair that the time you feel exhausted and helpless is the time you most need to stand up and fight. As you can tell there are lots of people wishing you well on this site, I hope it will help to give you the strength to go forward. x

Tats in reply to Jan4910 years ago

Hi Jan49

My first stop after work tomorrow is to find this book. I'll read it and if necessary produce it at my GP appointment.

I'm overwelmed at the responses I have had and have gained so much more knowledge and understanding in a couple of days than I have in the last 8 months.

Thanks to everyone. I'll post again on Friday hopefully with good news. xx

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Hidden in reply to Tats10 years ago

If you can't find it in the Chemist there's links here on TUK or you can borrow a copy.

thyroiduk.org.uk/tuk/suppor...

keep us posted on Friday's appointment J x

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MrsPage310 years ago

Hi Tats,

Just googled Cardiac Syndrome X and found an article on hearthealthywomen.com.

It says that Cardiac Syndrome X mainly women and no-one knows what causes it.

Two factors that may be involved are lack of blood flow caused by microvascular dysfunction and enhanced pain perception. The chances of heart attacks with Syndrome X are small.

It may help you to read this article.

Good luck with everything,

Janet.

Tats in reply to MrsPage310 years ago

Hi Janet

Yes I had the enhanced pain perception reason volunteered by the cardiologist. I told him I was not a wimp and I had experienced severe pain when I gave birth naturally and without pain relief to my son who weighed in at 11lb 12oz. The other comment I would make about that is when you have a pain in your leg, arm, back, it is not nearly as frightening as pain in your heart/chest. When I first got this pain I almost passed out. I do believe in the lack of blood flow cause as the colour drains from my face. Whatever it is it has a debilitating effect. I just hope when I sort the thyroid problems out the heart may behave a bit better!

Thanks for the good wishes.

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MrsPage3 in reply to Tats10 years ago

Hi Tats,

I hope you didn't see this as a critisism as it definitely isn't.

I have untreatreated hypothyroidism and feel like death warmed up. I also had what I thought was heart problems, palpitations and pain. I was diagnosed with ventricular bigeminy after weeks of tests and a wonderful cardiologist. I now have that part under control.

Despite loads of suggestions and support from this group I am no nearer to getting treatment for my thyroid. I was the highest scoring volunteer on the Thyroid UK research programme for symptoms, but no docotor is interested in my symptoms except to send me for Altzeimers tests for my really crap memory. I'll keep on hammering on doors until someone listens but it all seems futile at times.

i'm going to pay for a full range of blood tests as soon as I can raise the money and hopefully an appointment with Dr Peatfield.

I wonder if the heart things are all tied up with Hypothyroidism?

My research came back with my free T3 being low and the NHS don't even test for it.

Still I'll keep trying.

warm regards,

Janet.

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Hidden7 years ago

Hi all, I'm just catching up with this. I was diagnosed with Cardiac Syndrome X in June 2013 and started on 20 mg of nitrates daily. There is a good fact sheet on CSX on the British Heart Foundation website & some more "scientific" info here:

patient.info/doctor/cardiac...

My cholesterol was 8.1 but I didn't tolerate any statins and try to control it by diet. I have been vegetarian for 40+ years.

In May 2014, I was diagnosed with hypothyroidism after seeing GP re: fatigue; TSH 17

Started on levothyroxine - 50 mg daily. Aug 2014 - TSH 3.5

November 2014 - saw GP re: fatigue/lack of stamina; nitrates increased to 20 mg twice a day.

June 2015 - saw GP re: chest pain/fatigue; changed to slow release nitrates - 40 mg once daily.

August 2015 - told my BP was low (101/49) and my cholesterol still high ( 8.3, with an LDL of 1.9, fasting blood test done in June)

November 2015 - review with GP - mentioned chest pains outside the effective period for the nitrates and ongoing fatigue/lack of stamina. She referred me to the cardiac specialist nurse.

21st December 2015 - received phone call from the Cardiac Specialist Nurse. She thinks that the mononitrate may not be enough. There are other anti-anginal medicines, including calcium channel blockers. She recommended that I walk every day, use the GT spray and do warm ups before I go out.

January 2016 - GP took me off nitrates and put me on Nicorandil, 10 mg daily. Has to be low dose because of my low BP. I feel the best I have for two years - more stamina, much less chest pain. I have review with GP next week and will ask to be increased to 20 mg - 1 tablet morning and 1 evening:

patient.info/medicine/nicor...