Hypo/Hyper/High Cholesterol : Been on eltroxin 2... - Thyroid UK

Thyroid UK

137,149 members160,830 posts

Hypo/Hyper/High Cholesterol

healthymarge profile image
18 Replies

Been on eltroxin 25 years for hypo. Going from hypo to hyper for past few years gp not concerned in spite of symptoms no antibodies so I lower/higher dosage as how I feel. Cholesterol levels going up and up and recent was 8 2. Shocked as have been watching diet and lost a stone and exercise regularly. TSH 0.29.(0.36-5.33)FreeT4 14.5. (8.3-15.6) Vit D 71. T3 not checked or Vit B12. Scan showed thyroid gland atrophied. Hubby thinks pituitary might be at fault. Anyone have info on thyroid/cholesterol connection. Don't want to take statins in case thyroid reason for high numbers. Have irregular heartbeat sometimes and BP from 55 to 125. Had monitor on twice but was told normal readings even though I could feel heart beat changing! Any comments welcome.

Written by
healthymarge profile image
healthymarge
To view profiles and participate in discussions please or .
Read more about...
18 Replies
greygoose profile image
greygoose

High cholesterol is usually due to low FT3 - probably one of the reasons they refuse to test it, so that they can bully people onto statins!

Cholesterol levels have nothing to do with diet or weight. It is made in the liver and the more you eat, the less the liver makes; the more you eat, the less the liver makes, so as to keep levels steady. But, when T3 is low, the body cannot process and excerete cholesterol correctly, so it mounts up in the blood.

If your thyroid is atrophied, you probably have ords, despite the low antibody levels. Nothing to do with the pituitary. Ord's is not a name you hear very often but it is, basically, Hashi's without a goitre. It's an autoimmune thyroiditis. And, 20% of people with AI thyroiditis never have raised antibodies. The antibodies are not the disease, it's just that if you have them, it indicates Hashi's - collective name! :)

Nat107 profile image
Nat107 in reply to greygoose

Hi grey goose, I had many symptoms of thyroid condition for years, even as a child, suffered terribly years of normal bloods, do they said! till eventually was ill & showed in bloods as graves, went gif a thyroid US as always have the feff egg king of a limp in my throat as C if a piece of toast is stuck, I always get it still, ultrasound dr coujcbt even find my thyroid so had to get a senior in to look and said it was strophic, very small. Iv never heard of ords before and have bed. Research v for years. Is it the destruction of the gland due to thyroiditis , would just like some info on this as my thyroid is now very small Tia x

greygoose profile image
greygoose in reply to Nat107

Not sure what else I can tell you. As I said, Ord's is basically just Hashi's without a goitre. But, it's not the thyroiditis that destroys the gland, it's the immune system, just the same as with Hashi's. Not surprised you've never heard of it. The name isn't used in the UK, I don't think, any more than they use the name Hashimoto's. It's all just called Autoimmune Thyroiditis. Which is what it is. The name of the people that discovered these diseases seems to have become irrelevant, unfortunately for Dr Hashimoto and Dr Ord. :)

Nat107 profile image
Nat107 in reply to greygoose

Ar I see yeh, do you think that’s what it is with my now tiny throws thdn, hashi, ax although had graves then went for iodine to destroy the thyroid in anti nuclear dept, many years ago, measured it, had tests all day, and the the test iodine, they said ok ready to go tomorrow with full dose iodine to destroy it, i was devastedxsnd really upset as they said to keep away from my very young children, at the time, with having iodine, on going the next day and having scans again before the iodine, they were baffled that overnight my thyroid stabilised, so put it down to to the shock & upset of being told I had to keep a good distance apart from my children, so I didn’t get the fulll iodine, my thyroid turned itself under active but nit before going g through an awful time of it, I ended up with throtoxicosis and back at hospital for monitoring x

greygoose profile image
greygoose in reply to Nat107

Oh, that sounds really complicated! I wouldn't like to comment on that without a lot more information. But, if you tested positive to Graves antibodies, then it's doubtful that you have Ord's. Your thyroid will be small due to the RAI.

Nat107 profile image
Nat107 in reply to greygoose

I see, no I didn’t get to have the iodine, I had the tiny dose tester they take you in for a full day, do lots of tests and measurements. Give you the small dose testers to make sure your ok with it and reactions then the day after you gif full treatment, as my thyroid weirdly stabilised literally overnight I didn’t get the treatment and went home, it turned itself and subsequently went on to nearly cause a thyroid storm ok to neatly cause a thyroid storm, I was in a bad way, prob destroyed over the years of not being discovered as abnormal

greygoose profile image
greygoose in reply to Nat107

Ah, I see. Sounds very strange. But, I would need to see a lot of labs to understand more. And, of course, the main question is: did they do all the right blood tests to find out what was going on? Sounds like the didn't!

Nat107 profile image
Nat107 in reply to greygoose

It was over 25 years ago now grey, I did have lots of bloods done frequently at the time as was under a endo for graves, but then left a year without meds until turned toxic, can’t remember too much now, don’t think they really u detests d the thyroid fully themselves which the endo did say it’s so complicated himself

humanbean profile image
humanbean

My total cholesterol is often over 8. It doesn't bother me. I would not agree to get my cholesterol or other lipid levels tested, nor would I ever agree to take a statin.

You might like these links on the subject :

twitter.com/RosaSorribas/st...

drmalcolmkendrick.org/2012/...

spacedoc.com/articles/50-fa...

healthinsightuk.org/2020/01...

ravnskov.nu/2015/12/27/myth-9/

SlowDragon profile image
SlowDragonAdministrator

High cholesterol is linked to being under medicated and still hypothyroid

nhs.uk/conditions/statins/c...

If you have an underactive thyroid (hypothyroidism), treatment may be delayed until this problem is treated. This is because having an underactive thyroid can lead to an increased cholesterol level, and treating hypothyroidism may cause your cholesterol level to decrease, without the need for statins. Statins are also more likely to cause muscle damage in people with an underactive thyroid.

Obviously you need to get Ft3 tested....and folate, B12 and ferritin

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies...or by scan......including Ord’s thyroiditis

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Is this how you do your tests?

Private tests are available as NHS currently rarely tests Ft3 or thyroid antibodies or all relevant vitamins

List of private testing options

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus vitamins including folate (private blood draw required)

medichecks.com/products/thy...

Thriva Thyroid plus antibodies and vitamins By DIY fingerpick test

thriva.co/tests/thyroid-test

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

If you can get GP to test vitamins and antibodies then cheapest option for just TSH, FT4 and FT3

£29 (via NHS private service ) and 10% off if go on thyroid uk for code

thyroiduk.org/getting-a-dia...

monitormyhealth.org.uk/thyr...

Medichecks - JUST vitamin testing including folate - DIY finger prick test

medichecks.com/products/nut...

Medichecks often have special offers, if order on Thursdays

Most important result is always Ft3

Come back with new post once you get results

Often only TG antibodies raised...NHS won’t test TG antibodies if TPO are negative

Fruitandnutcase profile image
Fruitandnutcase

When I had Graves and my TSH was below 0.03 - as low as the lab range went but I was told by an endocrinologist that it would have been less than that, my cholesterol was the lowest I have ever seen it. Been in remission since 2013 and my TSH has now crept up to over 2 - my cholesterol has crept up too. I use the Medichecks UltraVit test regularly so I know - as well as fitting the range for T3, T4 and TSH - that all my bits and minerals are in a good place.

I tried statins many years ago and stopped after a couple of weeks because of severe muscle pains and my GP knows I won’t take them again although I’m sure they would like me too. Last time it was mentioned I just pointed out the link I’d noticed and said if they brought my thyroid levels down my cholesterol would come down too.

Alas the NHS won’t tweak thyroid readings that come ‘within the range’ - even though I felt better with it around 1 and it would lower my cholesterol and keep them happy - so I’ve stuck with high cholesterol and no statins for all the sensible reasons given above.

At my advanced age, I’ve found that once you’ve refused statins a few times they stop bothering you about taking them.

healthymarge profile image
healthymarge in reply to Fruitandnutcase

All so confusing! I'm 68 and gp said it's a personal decision to not take statins.

Fruitandnutcase profile image
Fruitandnutcase in reply to healthymarge

I must have been a good bit younger than that when I tried them - late 50s maybe, I saw a locum GP when I said I had stopped taking them and she said I could try a ‘better ‘ one - I was on simvastatin at the time when I said definitely not she said I could try Benecol type products, they appeared to have had good results.

I did some research and discovered that if you took into consideration all the problems I was having with the statins it wasn’t worth it and I think I’ve read that they don’t make a huge difference to elderly patients - I’m 71. Plus I think they can raise your blood sugar which I definitely don’t want. I’m sure my GP has decided that I’ve made my choice so I don’t come under any pressure to take them now.

Batty1 profile image
Batty1

Im thyroid-less and currently going through super high cholesterol levels and statins just agitated my psoriatic arthritis so I stopped them and I definitely believe cholesterol is tied to the thyroid levels but getting endo to see this is a challenge.

healthymarge profile image
healthymarge in reply to Batty1

Yes I'm currently researching everything I can find on this topic to show my GP but I guess the last info I gave her ended up in the bin ! I've asked to be referred to a specialist in lipids to check out a genetic factor. In the meantime we can share any tips!😀

Batty1 profile image
Batty1 in reply to healthymarge

I can’t sorry my cholesterol hasn’t moved and because Im in the middle of a psoriatic arthritis flare I can’t even exercise enough to see if it will lower my levels. This week I see endo I'm going to get a med increase or try at least.

Fruitandnutcase profile image
Fruitandnutcase in reply to Batty1

I think they just don’t want to see it. Rock bottom tsh and nice low cholesterol - tsh increases so does cholesterol. Regardless of exercise etc although I tend to think a junk food free diet would help but who knows.

Batty1 profile image
Batty1 in reply to Fruitandnutcase

I have a very low TSH and FT4 and T3 but I inject a immunosuppressive drug monthly and I swear this makes my numbers look lower than they might actually be. I have no proof other than my own personal opinion and the fact that my cholesterol numbers have never changed even with exercise and weight loss (prior) to losing my thyroid although this is the highest I have ever seen my cholesterol.

You may also like...

Struggling with hyper symptoms but hypo

reduced from 125 to 100 but this sent tsh hypo and taking alternate 125/100 sends me hyper again!...

Hypo but getting hyper symptoms

is down to 6, my symptoms are ranging from hypo to hyper, I have not gained weight, went down to a...

Hunger - hypo or hyper

has experience with this hunger - is this a hypo or hyper symptom? Do have high antibodies in...

Hyper thyroid but hypo symptoms

just got told by my GP that I have an overactive thyroid and I have an endo appointment in...

Hypo or Hyper or what?

I really feel like I have a combo of both hypo and hyper symptoms. I take Tirosint and have for...