Need 2 now wot to expect x

[Mummys45]

Allo peeps I'm on 200mg of the and I have under active TYHROIDs also I'm taking 20mg of Atorvastatin for the last year. I really need some advice because I have

Pure hypercholesterolaemia

Again I only found this out a year ago. I'm 47 years old xx

[Mummys45]

I also have Hashimotos

[jamesal0]

@Mumsy

There is a pretty clear connection between low thyroid and cholesterol problems, so you may just not be sufficiently dosed ? (google "levothyroxine cholesterol levels)

My cholesterol problems went away after changing to desicated thyroid.

I've recently gone onto a split of Levo and NDT but haven't had my cholesterol levels checked since.

James

[Mummys45 in reply to jamesal0]

Apparently I've got the disease from my mum and dad having 2 gens that made me x

[Gcart]

What is yr cholesterol when first started on statins ?

[Marz]

I believe the NHS website mentions the need for a well treated thyroid before prescribing a statin. They are contra-indicated with levothyroxine too ..

[LAHs in reply to Marz]

Yep, statins and thyroid meds don't mix. Try to solve the problem that the statin is prescribed for, some other way.

[Hidden in reply to LAHs]

Are you able to point me to more info on that topic? I can't find anything on it. Ta.

[Breena in reply to Hidden]

Please read the reply to mummys45 from espeegee click on the link a long read but really good.

[Hidden in reply to Breena]

It is an interesting article but I didn't see anything about levo in there. Did I miss it?

[vocalEK in reply to Hidden]

Try this: ncbi.nlm.nih.gov/pubmed/250...

"CONCLUSION:

This large population-based study demonstrates significant interaction between levothyroxine and iron, calcium, proton pump inhibitors, statins and oestrogens. These drugs may reduce the effectiveness of levothyroxine, and patients' TSH concentrations should be carefully monitored."

[Hidden in reply to vocalEK]

Ok, interesting. I've seen that previously. As usual, these articles leave me with more questions than answers, though to be fair they may have been answered in the full article which I can't access. I don't see anything that tells me that they don't mix, rather that a person on both meds needs to be carefully monitored. Now me, personally, I don't take a statin, so I'm not arguing in either direction! More that I'm trying to analyse what the article says.

Maybe LAHs has seen something different?

Cheers!

SiM

[LAHs in reply to Hidden]

Well I think it's drugs.com which gives you all the interactions of drugs - although it doesn't tell you how or why the interaction takes place. In the case of Statins and thyroid meds both of them compete for things called thyro binding globulin (TBGs), those are the transporters of each around the body. If Statins are using the majority of the TBGs then there is no way thyroid meds can "get a look in".

Regarding lowering cholesterol some other way I understand it is a matter of losing a lot of weight (and therefore minimizing fat) and eating the right diet with foods which will reduce the bad cholesterol.

Regarding pointing you in the right direction I would say google "Drug Interactions" for the first topic and "Diets for reducing cholesterol" for the second topic.

[Hidden in reply to LAHs]

Thanks. I'm not hoping to reduce my cholesterol but a family member does so I'll read through it.

[Hidden]

In other words, leave off statins. Apparently research has found no reliable evidence that statins do any good - except they may help men who have had a heart attack (though not by lowering cholesterol)! And they can have horrendous side effects, or maybe do more hidden damage. They also clash with thyroxine if you take it.

Probably best to cut down slowly though, to give your body time to readjust. I cut down to one every other day, then every 2 days etc. Stopped completely in a few weeks.

[Mummys45 in reply to Hidden]

Wot side affects would I gwt

[Mummys45 in reply to Mummys45]

Get

[Angel_of_the_North in reply to Mummys45]

Muscle aches and pains and calcification of the arteries (leading to increased risk of heart attack), plus type 2 diabetes are known side effects of statins.

[Mummys45 in reply to Angel_of_the_North]

Funny my daughter of 21 got diagnosed diabetes type 1 diabetes and apparently I gave her the gene

[Hidden in reply to Angel_of_the_North]

Thank you. I knew there were several, besides muscle problems, but I think they leave those off the information sheet!

Of course they can always blame the high cholesterol, not the statins if you have a heart attack etc!

[Mummys45 in reply to Angel_of_the_North]

So I've gave my daughter of 21 diabetes type 1 she takes 5 injectionsa day and it's all my fault. How and why has this happened to my beautiful daughter x

[Angel_of_the_North in reply to Mummys45]

So blame your great great great grandparents for passing the gene down to you. It's just one of those things. I've worked with plenty of people with diabetes and they have lives that are just fine.

[Hidden in reply to Mummys45]

It's not all your fault! The human race is gradually deteriorating genetically and things like this will happen xxx

[Hidden in reply to Mummys45]

If you stopped statins, or if you continued?

If stopping any regular medication it is best to do it fairly slowly, though many are OK. Some, like steroids, or pain killers, can cause withdrawal symptoms. I don't know of any problem with statins but best to be sure. A sudden increase in cholesterol might happen for example.

if continuing with statins I think the most common problem is with the muscles, such as aching or stiffness, or worse. But that doesn't happen often. I tried a few different ones because of some side effects. One gave me a weird stiffness in my head and neck. The sheet that came with the tablets should list possible side effects. Statins are not recommended for older people either, so as I'm over 70 it was a good excuse to stop them!

[Mummys45 in reply to Hidden]

I'm just so fed up with the way I'm feeling every day. I'm keeping a job 3am till 3pm 4 days a week and I'm falling asleep asleep as soon as I get home with I feel like I'm not spending any time with my family x

[JOLLYDOLLY]

Hi, Mummys45,

I have never understood the cholesterol side of it?? I am also on 200 mcg of T4 and 20 mcg of T3. But always had low cholesterol.

In the UK, they seem to score you, anything above 5 is considered high/bad cholesterol and may need medication or change in diet. I always sit around 3 -3.7. Checked annually. Not sure of the implications so can't help you I am afraid.

Take care

[Mummys45 in reply to JOLLYDOLLY]

Thank u sweetie x

[Hidden in reply to JOLLYDOLLY]

Apparently it isn't the high cholesterol that causes the problem. Cholesterol does important work in the body. One job is to repair damaged blood vessels. If there is a lot of damage, or if the cholesterol isn't cleared fast enough after doing its job, then there are risks. Low thyroid makes the whole body sluggish, so the liver can't recycle the cholesterol properly. It's like having too many road works lorries around, which affects the flow of traffic.

[Mummys45 in reply to Hidden]

This is all about I'm wot I have x

[JOLLYDOLLY in reply to Hidden]

Thank you for explaining jnetti. All they ever say to me is " that's good", so I naturally assumed, one less worry! ha ha

[Hidden in reply to JOLLYDOLLY]

I learned all of it since joining this forum! the folks here are such a help and encouragement

[Mummys45 in reply to Hidden]

These are my results xSerum cholesterol

Result

5.8 mmol/L

Normal range

N/A

30 Jul 2018

Serum HDL cholesterol level

Result

1.0 mmol/L

Normal range

N/A

30 Jul 2018

Serum cholesterol/HDL ratio

Result

5.8

Normal range

N/A

30 Jul 2018

Serum triglycerides

Result

6.6 mmol/L

Normal range

N/A

Abnormal

30 Jul 2018

Calculated LDL cholesterol lev

Result

N/A

Normal range

N/A

30 Jul 2018

Se non HDL cholesterol level

Result

4.8 mmol/L

Normal range

N/A

[Hidden in reply to Mummys45]

"Normal" range doesn't mean much, we need the actual numbers to be sure. But 6.6 as "Abnormal" likely isn't that high anyway.

Do you have any thyroid results you can post on here? They will show how you are doing there. If you have Hashimoto's, your symptoms suggest you are undermedicated, whatever the doctor says.

For example, you could write:

"TSH 2.8 (0.25-4.2)", or whatever the results say. The range is the numbers in brackets, (or sometimes they put a little "R" next to them) but most people with Hashi's need a TSH of under 1 and T3 and T4 high in their range to feel better.

[Mummys45]

OK getting it now x

[DIYqueen in reply to Mummys45]

Yes I believe triglycerides are more the problem than cholesterol. After my last tests my Dr actually asked me to ring her as my chol was going up! I got my results and checked them against 2016 ( couldn't find any others). My triglycerides have come down - a lot. My HDL has gone up and LDL come down. So the ratio has changed from 7:1 (bad) to 3:2 perfect. So although my total chol has gone up I am VERY pleased overall.

This with increase in butter, olive oil and coconut oil (I eat it by spoonful!). Decrease in sugar and carbs. Moderate meat.

[Mummys45 in reply to DIYqueen]

Thanks for advise

[Mummys45 in reply to DIYqueen]

But wot am I to expect

[Mummys45]

My cholesterol level is 1.5

[Angel_of_the_North in reply to Mummys45]

Are you sure? That's incredibly low = too low to be healthy as you need cholesterol to make hormones and run your brain.

[Mummys45]

Can anyone help me. Wot sort of life do I have ahead of me x wot am I going to expect to happen to me xx just be honest x

[Angel_of_the_North in reply to Mummys45]

As good a life as anyone else and as good as you want to make it.

[MaisieGray]

I believe folks may be commenting here, and advising against statins, under the misapprehension that the OP's diagnosis of pure hypercholesterolemia is 'just' common or garden high cholesterol, and therefore statins aren't required. However, the condition is a genetic one, arising from a mutation in one of three genes, and not the result of lifestyle choices or diet, not connected to high cholesterol levels or to eating high fat foods, nor to hypothyroidism. With the condition, the liver cannot recycle cholesterol or regulate cholesterol levels and as a result, cholesterol builds up in the bloodstream and increases the risk of heart disease. It's perhaps worth considering that the balance of risk between this condition and statins is different than in non-sufferers, and for instance, according to the National Human Genome Research Institute, men with the condition tend to have heart attacks early in life, when they are in their 40s and 50s, and c85% of men will have a heart attack by 60 years of age; whilst women with the condition also have an increased risk for heart attack, most commonly from 50–60 years of age. Perhaps the standard suggestions given to those with 'just' elevated cholesterol levels might not be relevant, or even safe, for the OP.

[Angel_of_the_North in reply to MaisieGray]

I read in one study or other that heterozygous Familial Hypercholesterolemia can be treated without statins - but one of the gene problems (ApoB) associated with it is also associated with heart disease (so it's not the cholesterol itself causing the problems, that 's just a symptom). Two old-ish case studies: lifeextension.com/magazine/... basically, it means you have knackered LDL clearance and it is not recycled properly. There will also be a tendency towards xanthelasmas and arcus cornealis. Statins might well help, but: "Notably, data from RCTs comparing statins against placebo on more than 129,000 patients show significant correlation of statin-induced side effects with advanced age, small body size, female gender, renal and liver impairment, hypothyroidism, perioperative time-frame, multi-organ pathology, and alcoholism"

[MaisieGray in reply to Angel_of_the_North]

Yes, agree, and there's no doubt differing views about treatment depending which Dr is asked. Rather than focus at all on treatment though, my main intention was to caution folks against assuming - and thereby somewhat discounting - that the OP's genetic condition is "just one of those hypo things" or due to being inadequately medicated, which it isn't.

[Hidden in reply to Angel_of_the_North]

Familial low cholesterol is apparently a risk for heart problems and stroke too

[DIYqueen]

Sorry, I have lost track of who I am replying to:

Ooh and to add, I too have familial hypercholesterolaemia (mouthful!). I chose to come off statins at Christmas and TOLD Dr rather than asking. These results are since then, which is why she is getting nervous and wants me to retest in 3 months. My chol is only 6.7 for goodness sake! Even if it goes up further I shall concentrate on triglycerides and HDL ratio.

As for my comment on fats, there is a resource - didn't save it sadly, but you can google it -

Have a look at: bbc.co.uk/programmes/articl...

Coconut oil is by far the best at raising HDL. Plus you can eat it. Cooking with it is great as it has a high smoke point so doesn't burn.

As regards to the future. My brother and cousin had it and died young from heart attacks, but both smoked heavily, drank heavily, lived rough and did drugs. My mum lived to 70 [COPD, not chol issues]. My Gran lived to 96.

So regarding the future my advice would be the usual - exercise a bit, socialise, try new hobbies regularly to keep the mind active, eat a balanced diet without stressing over details too much (except maybe keeping carbs and sugar and processed food down as there is evidence for those), don't be scared of 'natural' fat. Butter, coconut and olive oil etc. [I avoid anything except first pressed oil (virgin) because of the processing needed to extract others.] Don't smoke, don't do drugs, drink in moderation. That's what my Gran did. We also have the advantage of testing and supplementing to keep Vits and Mins optimal. I do.

[Hidden]

About cholesterol, this just arrived in my inbox. Think I will put it as subject of another thread too:

drmalcolmkendrick.org/2019/...

[Mummys45]

I looked at my medical records and the doctor new in 2016. But never told me. Then this year i went of patient access and looked at my med history to find out I've got pur hypercholesterolaemia. And its because my parents both had a gene which put together made me pure hypercholesterolaemia, and apparently I should of been on satins as soon as Doctor found out x

[Mummys45]

These are my results hope this is OK Serum cholesterol

Result

5.8 mmol/L

Normal range

N/A

30 Jul 2018

Serum HDL cholesterol level

Result

1.0 mmol/L

Normal range

N/A

30 Jul 2018

Serum cholesterol/HDL ratio

Result

5.8

Normal range

N/A

30 Jul 2018

Serum triglycerides

Result

6.6 mmol/L

Normal range

N/A

Abnormal

30 Jul 2018

Calculated LDL cholesterol lev

Result

N/A

Normal range

N/A

30 Jul 2018

Se non HDL cholesterol level

Result

4.8 mmol/L

Normal range

N/A

[Mummys45]

I've posted my results x

[Breena]

Reading this is an I eye openner really worth reading.

[DIYqueen]

Jnetti's lnk above is VERY interesting and useful in decision making, although again as pointed out earlier it does not distinguish openly between those with hyercholesterolemia and just 'high chol'.

The reference to Tri being both normal and abnormal doesn't make sense. Again, eating less carbs/sugars will help lower these, which is a good thing,but not TOO far.

Your 5.8 is total chol I assume (all chol in blood). It's important to have a reasonable amount for all the jobs it does in building hormones, cell walls etc. This level seems OK to me, especially for someone with our condition. I think above 7 Dr's get twitchy.

But as I said before I put more store on triglycerides, fats which actually can cause clogging, with LDL delivering them TO tissues in blood vessels, HDL 'mopping up' and removing it BACK to liver. The total chol to HDL ratio seems more important in my book.

Ideal is close to 1.1, 2.2, 3.3 etc as decimals so yours is 5.8, (could be better) but because HDL is 1.0. (ie 5.8/1.0). In my view (and it is only opinion) the best way to improve ratio is to improve HDL: excersise, coconut oil etc - google ways.

and/or to reduce total chol. As yours seems close to normal of 5, then increasing HDL is way to go. Raising yours by only 0.5 would make all the difference and is achievable. See calculator:

diabetes.co.uk/cholesterol-...

eg for me 2016 total cholesterol 7.0 HDL 1.0 so ratio 7.0 (risk of heart disease - maybe)

2019 total cholesterol 6.7 (only small drop) HDL 1.9 so ratio 3.63 (healthy)

changes were to increase HDL not to necessarily lower total chol.

[Hidden in reply to DIYqueen]

Dr Kendrick's book "The Great Cholesterol Con" is well worth reading too

[DIYqueen in reply to Hidden]

I will look it up thanks.

[Hidden in reply to DIYqueen]

Not saying he's always right, but has the courage and integrity to check things scientifically and challenge the medical status quo

[Mummys45]

I was diagnosed when I was 18 its on my medical records hun.