Help needed.

[Bunnyhopps]

I havent posted for awhile but now I need help on what to say in phone call to a Pharmacist on Sat. Been on 75mgs of Levo for over 10years...never felt 100% and feel better on 100mgs but GP always goes by TSH.. as they do and not how I feel. In Jan had bloods done and told I had too much thyroxine and dropped me to 50mgs one day 75 mgs the next. Eight weeks later told I didnt have enough thyroxine so told to take 75mgs one day 100mgs the next. Then in May had phone call with Practice Pharmacist and told to continue on 75mgs one day and 100mgs the next but if I felt tired I could go to 100mgs every day. Thats what I did. I emailed GP in May saying I feel so much better on 100mgs so I dont want to drop to 75mgs again. They agreed. Then in June I had a heart attack!!! Cardiologist told me it was down to genectics passed from my late Dad. He was completely aware of my levo dosage and I was given 100mgs in hopsital. Fast forward to 2 wks ago...I have a phone call with a diff cardiologist who now blames me being over prescribed levo for my heart attack. Bloods done last thurs...in afternoon and after taking my levo that morning show my TSH as 0.05. The bloods were lipids but unknown to me thyroid too. Now I have a phone call on Sat with Practice Pharacist and I know he is going to drop me down to 75mgs and say my heart is at risk if I dont. I dont believe taking 100mgs of levo caused my heart attack. Any advice on what to say so I can stay on 100mgs would be very much appreciated. So sorry for this long winded post.😊

[SlowDragon Administrator]

Just testing TSH is useless

Insist on FULL thyroid and vitamin test before considering changing dose

Book EARLY morning test ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

What vitamin supplements are you taking

When were vitamin D, folate, ferritin and B12 last tested

What was cholesterol level?

[Bunnyhopps in reply to SlowDragon]

Thats what I thought....ask for a full panal. I was going to say that TSH is inactive hormone so I want T3 and T4 testing but I know it may not happen. My cholesterol was good..... 1...2...and 3.....but dont understand which is 'good' and which is 'bad' cholesterol. I have always had low cholesterol. Echogram shown a blockage in LAD but no stent fitted as blockage not severe enough when angiogram done.My troponin levels were high so confirmed I had a heart attack. Cardiologist explained that plaque can block the artery and a blockage of over 70% usually warrents a stent. I now have Angina and CHD. When my TSH was low back in Jan and I was told I had too much thyroxine in my body...I had no adverse symptoms...no palpatations no massive weight loss...nothing. I had an event 20 years ago....exact same pain in my chest that I am now convinced was a heart attack but I had a 'normal' working thyroid then. I had stress test done six months later and told it was muscular and I wasnt given any meds. Twenty years later I have same event...same pain in chest,arm and jaw and this time told its a heart attack and now on tons of meds. I am convinced its nothing to do with too much Levo and I believe dropping me down to 75mgs will only make me feel tired and just not with it just like I have felt for over 10 years on 75mgs. I have upped it myself on odd occasion over 10 years and felt better on 100mgs but gp always disagreed and prescribed 75mgs. Finally get someone telling 100mgs is fine(in May this year) then I have the heart attack and this one cardiologist,that I never saw whilst in hospital,blames too much Levo!

[SlowDragon Administrator in reply to Bunnyhopps]

Make sure other medications are well away from levothyroxine

And if now on a PPI like omeprazole that you retest vitamin levels twice year rather than annually

[Bunnyhopps in reply to SlowDragon]

Thankyou so much for all your advice ...I feel so much better about the phone call with Practice Pharmacist on Sat....reckon I can stand my ground...lol. Its so frustrating that we all have fight our corner where our thyroid is concerned. Once again....thankyou for your help.😊

[greygoose]

My cholesterol was good..... 1...2...and 3.....but dont understand which is 'good' and which is 'bad' cholesterol.

There's no such thing as 'good' and 'bad' cholesterol. Cholesterol is just cholesterol. It travels round the blood in protein carriers - LDL and HDL - to where it's needed in the body (and it is very much needed!). So, when they do a blood test for cholesterol, it's not the cholesterol itself they test, it's the protein carriers that they measure. Can't remember which is supposed to be good and which bad, but the whole idea is ludicrous, and was invented by Big Pharma to sell more statins by scaring people rigid. High cholesterol levels do not cause heart attacks or strokes, in fact they can prevent it. And you're in far more danger of a heart attack when your cholesterol is low than when it is high. Have a look at this article, and forget your cholesterol, it's irrelevant:

jamaica-gleaner.com/gleaner...

It's a subject I could go on about all night, but I don't want to bore you, so I'll leave it at that.

[Bunnyhopps in reply to greygoose]

Thankyou so much for this info....I will def read the article. I had no idea....about how cholesterol works.....and the statins I was put on were 80 mgs!!!! Again....I had no idea of the side effects. Mine was really bad cramps in my calves and a really painful knee. Cardio dropped statins to 40mgs and the pain has eased slightly but not gone. Its just been a rollercoaster since the heart attack as it came completely out of the blue. I always thought I was so healthy,never smoked,hardly drink,eat healthy and very active.....I am still getting my head around it all. The one thing the doctors dont prepare you for is the mental side of having a heart attack......I have been so scared of it happening again. Thankyou so much for the info.....its such a help. You wouldn't bore me either as I find it so helpful in understanding it all. 😊

[greygoose in reply to Bunnyhopps]

Statins are not recommended for hypos or women - and your doctor should know that! If you are hypo you are very likely to have high cholesterol because you need good levels of T3 for the body to be able to process the cholesterol correctly - carry it to where it's needed, excrete excess, etc.

Cholesterol is made in the liver - and the liver makes it because the body needs it. So, yes, statins would affect the liver. Diet has little to do with levels because the liver does its best to keep levels stable. So, the more you ingest, the less it makes, and vice versa. But, when T3 is low, as I said, the body cannot process cholesterol correctly, and it mounts up in the blood. Raise the T3 your body needs as an individual - and we're all different - and the cholesterol level will drop.

Statins do cause muscle pains, that is well-known. And, when you're hypo, sever damage can be done to the muscles by statins.

And I do understand the fear of it happening again. I've never had a heart attack but I did have an op for a slipped disc, and they were talking about if it happens again - which, apparently is very likely - I'd have to have another op! And I was thinkin, oh, god, no! I can't go through that again! It's terrifying.

[Bunnyhopps in reply to greygoose]

I find all you are telling me so interesting and you have no idea how much you have helped me by taking the time to reply. I feel better being armed with this knowledge. Thankyou so much....I will let you sleep now....but I hope you never have to go through another op for your slipped disc. Take care and thankyou.x

[greygoose in reply to Bunnyhopps]

Well, the irony is that I didn't even have a slipped disc in the first place! Just hypo lower-back pain. And, had they tested my thyroid, I wouldn't have had the op at all. But they didn't. And, it was just my luck to fall upon a scalpel-happy surgeon that was desperate to operate at all costs, and deliberately mis-interpeted the scans, exrays, etc. Story of my life! Sigh.

Hope you have a good outcome with your pharmacist!

[Bunnyhopps in reply to greygoose]

I can't believe what you had to go through!!!! But then again.....I kinda can...knowing how you don't get listened to sometimes. If must have been awful for you. Take care.😊

[greygoose in reply to Bunnyhopps]

I don't think you ever get listened to. Not really. And, even if they do listen a bit, in their heads they change the facts to fit their theories, prejudices and expectations - e.g. if you are hypo you are fat with low blood pressure and feel the cold, which is not always true.

[Bunnyhopps in reply to greygoose]

Just read the article....its so interesting! I noticed on recent lipid blood results that my Bilirubin level was over the highest range...not by much but I googled it and its to do with the liver. Having just read the article I never realised statins can affect the liver and lipids need to be checked every 3-6 months whilst on statins. This will be something I make sure is checked.