Starting NDT now or wait?? High cholesterol wor... - Thyroid UK

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Starting NDT now or wait?? High cholesterol worries

Lina13 profile image
27 Replies

Hi all,

This is my first post although I have been following the forum for a couple of months now. Love this forum, it's so active and helpful!

Now I feel it is time to start asking for help. (I have a few questions that don’t really relate so maybe I better start new threads for each question?) For more background info please read my profile!

I was planning on self medicating (but hesitate as some people warn against it for good reasons) as I have no diagnosis of hypothyroidism. The ref ranges here in Sweden are lower than in the UK but it’s still very hard to get a doctor to listen and consider your symptoms. Especially the general practioners are IMO not very knowledgeable of thyroid matters. Anyway after years with diffuse symptoms and feeling tired and not at all optimal (but not VERY ill either) I have decided to take matters in my own hands. After reading a lot I started supplementing vitamins and minerals so that I’d at least be as optimal as I can before starting any treatment. I first wanted to see how I felt after some months taking supplements. I am also trying out Progesterone cream for about a month now since I am probably perimenopausal (53 years old).

But, yesterday I got a phone call from the doctor saying that my cholesterol was sky high. Total was 10.6 and LDL was 7.2. She wanted to start me on statins immediately. I have only read worrying things about statins and I have no intention of taking them…. I also have read so many times that high cholesterol can be a symptom of hypothyroidism. I am quite skinny, don’t smoke, eat mainly meat, fish, vegetables, eggs, nuts and not many carbs. But she got me worried and I was thinking maybe it's time to start my trial of NDT now instead of waiting several more months?? (I have Thai Thyroid and some Armour at home)

The reason for the doctor testing my cholesterol was that I have been feeling a little tight chested at times, no pain but more of a kind of muscular tightness under my breasts. A new symptom for me…This started at the same time I started taking vitamins/minerals and doing rehab pilates but it has improved lately. I had resting EKG done and it was fine, but she wants me to do an exercise EKG too. My blood pressure is on the low side, and so is my resting pulse.

This are my latest bloods:

2016-02-17

TSH 3.12 (ref 0.20-4.00)

T4 14 (ref 9-22)

T3 4.4 (ref 2.5-5.6)

B12 495 pmol/L (ref 150-800)

Folate 18 nmol/L (ref 7.0-40)

Vit D 79.0 nmol/L (ref 25-105, optimal nivå 75-250)

Ferritin 29 mcg/L (ref 10-130)

This is my highest level of TSH so far.

I've had TSH tests and other thyroid tests quite regularly since 2009 and have been tested for antibodies (TPOAk) twice, in 2009 and 2012 which was negative.

My ferritin has been kind of low all these years, from 17-46 at its highest but I had no idea then that it should be higher in the range, this is something I learnt on this forum.

I don’t have the cholesterol tests yet, hopefully I will get a printout on Monday so I can see what exactly they tested.

I take my temps every morning at waking and they usually are 35.7-36.2C.

Another reason I have also hesitated starting on NDT is this: in Mark Starr's book at the end Jerry Tennant writes 'most people eventually develop antibodies to desiccated thyroid'. ??? What does that mean?

Any advice or thoughts are greatly appreciated! (Sorry for the long post)

Lina

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ITYFIALMCTT profile image
ITYFIALMCTT

It will be interesting to see your cholesterol results and the breakdown of them - was it a fasting test? (I'm likewise high cholesterol, low blood pressure (roughly 85/55), resting pulse approx.  58 bpm, lower end of BMI, 'athletic' category of body fat (estimated by DXA scan), lifelong non-smoker etc..)

As for the rehab Pilates, are you doing any novel (to you) exercises such as holding a plank, table, or bridge? There have been some stories about people doing these exercises and experiencing considerable chest pain, sometimes even inflaming the sternum and ribs. E.g., dailymail.co.uk/femail/arti...

I'm sure an experienced member will be able to comment on your blood test results in a way that might provide a way ahead for you.

Best wishes for a clear outcome and plan for the future.

Lina13 profile image
Lina13 in reply to ITYFIALMCTT

Thank you for your answer ITYFIALMCTT.

Yes, the test was done fasting.

The 'pilates' I am doing is very easy, it's called rehab pilates, we don't use any machines, just the body itself and are for people who have pain, back problems, fibromyalgia etc. Since I have fibro pain (maybe! not so sure it's due to fibromyalgia) I take it very easy as I get pain afterwards otherwise. It is new to me though and some of the exercises give me soreness the next day.

Are you on any thyroid treatment and have you noticed any change in your cholesterol levels? I had high cholesterol when I started my trial on levo but not as high as this and the levels went done a little then. But that was years ago. Since 2013 I haven't been on any thyroid replacement.

I just don't know if I should start my planned treatment now to hopefully get the cholesterol down or wait until I have supplemented a few more months? Or if I should be worried about the high cholesterol levels like the doctor suggested (she sounded very urgent).

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Lina13

No, I'm not currently on any hormone treatment. I have some blood work for which I'm awaiting the results.

I'm fortunate in that I think my GP hasn't read the detail of the cholesterol tests and has been content with the QRISK and other calculations provided by the lab all of which place me in the low risk category. My suspicion is that if someone actually read the detail then I would definitely have the statins talk from them (is it bad that I hope the practice continues to read the 'executive summary' rather than the detail?).

If I go in to discuss the results of my recent blood work it might be unavoidable that the GP reads all of it - in which case I might need to ask for some time to try 'lifestyle modification' before accepting a prescription for statins.

 In my case, depending on the thyroid/vitamin section of the results, I might consider trialling whether some thyroid medication might reduce the cholesterol. (There's a back story that makes sense of this but this post is already too long. :) ) I don't expect the GP would countenance this if the TSH is <10 so I might have to self-medicate as an experiment and to satisfy my own curiosity.

Depending on what you know about your family and personal history, it's a very personal decision whether you're as troubled about your cholesterol results as your doctor.

Best wishes for making the decision that will suit you best.

Lina13 profile image
Lina13 in reply to ITYFIALMCTT

Didn't know what QRISK what, looked it up and found this calculator but since I don't know my ratios of cholesterol maybe no point in doing that.. Got the blood test print yesterday and they haven't done anything else than total cholesterol and LDL. I try not to be worried but I made the decision to start taking the thai Thiroyd today. Very small starting dose, only 1/4 pill.  Have no intention of taking statins, the more I read about it the less I want it.

I have no idea about family history since we have very little contact with our relatives, I only know of my mother and brother and both are fine.

It would be interesting to know what your results of the blood tests are and if you decide on any thyroid replacement. I wish you the best too!

ITYFIALMCTT profile image
ITYFIALMCTT in reply to Lina13

I'll post my cholesterol results later - they're still "above the reference range for high" as the lab expresses it... So, high total cholesterol, high HDL, and high LDL (low normal triglyceride level).

Can you say what your total cholesterol and LDL were? They're both useful figures and there's a reasonable change of working out what your non-LDL figure is tho' it's probably not possible to estimate your triglyceride levels.

Lina13 profile image
Lina13 in reply to ITYFIALMCTT

My S-cholesterol was 10.6 nmol/L (ref range 3.9-7.8) and LDL was 7.2 (ref range 2.0-5.3) That is all it says. Before with another private doctor she tested triglycerides, HDL and LDL/HDL ratio which must give a better picture. I was very surprised to see only these two levels.

greygoose profile image
greygoose

Doctors are always very urgent about taking statins - I think they get bonuses or something for prescribing them! Pity they aren't equally urgent about treating hypo! Also, as all they know about cholesterol is what the drug reps tell them, they Don't understand it at all!

High cholesterol is a symptom, not a disease. It is linked to low thyroid. It will not cause a heart attack. It is not caused by eating too much fat!

Cholesterol is made in the liver, because the body needs it. It needs if for many things - making hormones, carrying out repairs in the cells, feeding the brain. You are more likely to have a heart attack if your cholesterol is low than if it is high.

You're right about statins, they can cause all sorts of problems, can cause diabètes and give you pains in your legs. They can also cause cancers, like prostate cancer, by lowering levels of sex hormones. All for doing something that isn't desirable in the first place : lowering your cholesterol.

But Big Pharma are making a fortune out of them! So, they want more and more people to take them. And to that end, ranges for cholesterol levels are getting lower and lower. We must resist! I suggest you check out Dr Malcolm Kendrick. He has written books and has a blog, telling you all about the big 'cholesterol con', as he calls it. And he's right!

As to your blood tests, a TSH of 3 or more is hypo. No matter what the ranges say. You say that's the highest it's been, what has it been before?  Your FT4 isn't quite mid-range, and your FT3 is just about mid-range, so you Don't have a conversion problem, you just Don't have much to convert.

Your B12 is a little low - optimal is 1000. I would suggest 1000 sublingual methylcobalamin daily. Plus a B complex. If you get one with methylfolate, that will bring your folate up nicely.

Your vit D is a little on the low side. But your ferritin is very low. Hope you're supplementing that. :)   

Lina13 profile image
Lina13 in reply to greygoose

Thank you for your reply, greygoose. I totally agree with you! I have read enough about statins and how doctor readily prescribe them to people who don't really need them. About how they can cause many more and serious problems. For me it's enough that they may cause pain, I have enough of that already... So no, I am not going to take them. I do hope that my cholesterol will be lowered a bit by my starting NDT. For me it was actually the last symptom that I needed to decide that I DO suffer from hypothyroidism. I do believe that high cholesterol is indeed a symptom of this. I was just worried because I have had these 'tight chest' feelings lately. But I also see a pattern where they get worse close to my period. So I think they might have to do with other hormones too.

What you said about my blood tests got me interested, how can you tell by them that I have no conversion problem? I don't know how to interpret T4 and T3.

I am taking B-12, 1 or 2 1000mcg everyday plus a B-complex (with folate). Didn't think my D vit was low?, being in the optimum range even though at the bottom. Do you think I should supplement D-vit? I do have some 5000IU softgels but haven't been taking them. And yes, I am supplementing iron now.

greygoose profile image
greygoose in reply to Lina13

Cholesterol will not cause a heart attack - nor give you pains in the chest - no matter how high it is. That is not what cholesterol does. It is an important nutrient, and we die without it. You're much more likely to have a heart attack if your cholesterol is low than if it is high.

I believe optimum for vit D is 85 to 100, so yours is a wee bit low. Try taking one 5000 IU a week. But do take some vit K2 with it, because vit D increases absorption of calcium from food, and the K2 directs it into the bones and teeth, rather than the tissues.

Lina13 profile image
Lina13 in reply to greygoose

Good, you have reassured me re: heart worries and I will take the vit D once a week. Will have to search for K2, have never seen any K2 supplements.

Would really appreciate your answer on this too:

'What you said about my blood tests got me interested, how can you tell by them that I have no conversion problem? I don't know how to interpret T4 and T3.'

Many thanks,

Lina

greygoose profile image
greygoose in reply to Lina13

Well, if you are converting correctly, the FT4 will be lower than the FT3 in their respective ranges. If the FT4 is up near the top of its range, and the FT3 is down near the bottom, then you are converting badly. It's as simple as that. :)

Lina13 profile image
Lina13 in reply to greygoose

Ok, thanks a lot!

Glynisrose profile image
Glynisrose

Any exercise will deplete T3.  Go by how you feel not numbers.  

Lina13 profile image
Lina13 in reply to Glynisrose

Even very light exercise? I actually feel more worn out and stressed doing grocery shopping than my rehab pilates...

And yes, I am hoping that my cholesterol will be reduced by NDT which I started today.

Glynisrose profile image
Glynisrose

Cholesterol tends to reduce with the use of NDT. 

BadHare profile image
BadHare

Hi Lina,

I have a pituitary adenoma, diagnosed 3 years ago, & have had symptoms of hypothyroidism for nearly 40 years. My TSH is normal, but as you'll be aware from reading posts on here, it is not an accurate test for thyroid hormones, especially for secondary hypothyroidism.

Like you, I read posts & articles on here for a long time, & decided 12 months ago that I wanted to try NDT. As a precaution, I confirmed my self diagnosis by doing a basal body temperature test. My morning temperature was usually 35.1C & never above 35.3C, my evening temperature was usually 35.9, & rarely as high as 36.1, even with two winter quilts on my bed & an electric blanket.

I procured WP ThyroidNDT & started with 1/4 grain dose, which I increase every two weeks. Nothing happened until I had been taking 1 grain for a month, when I started to warm up, & stopped feeling like a sloth. Even my FM symptoms have subsided. I increased to 1 1/2 grains which made me feel wired & prickly, so dropped back to 1 grain, though 1 1/2 is what seems to suit me whilst the weather has been cold.

The only issue I had, aside from taking too much for two days, was swapping to a different brand, as Thyro-Gold seems to do me more harm than good.

This last winter has been the first in 40 years, when I have not felt constantly cold. I am sure that the cost of my NDT will be covered by reduced heating bills. Now, when I have hot food or drinks, it makes me warm, whereas before, only very hot baths ever made me feel so. I now eat at least 500 additional calories a day, & am the same weight as I was a year ago, when I piled on weight if I ate over 1,000 calories.

My cholesterol was 7.1 last year, prior to taking NDT. This is not excessively high, but I was surprised as NDT aside,  I am vegetarian & eat a clean food diet. I have read that hypothyroidism can cause high cholesterol, so am interested to see what future test results will be. I have also read that statins have a negative side effects, and once started, they need to be taken indefinitely.

If you are cautious in trying NDT, as I was, I cannot see that it will do you lasting harm. Your body will tell you if it feels right or not.

I'm going to try T3 next week, & reduce my NDT dosage by half. Knowing how I feel without NDT, & how I feel when I have the right dose, or too much, I am confident that my body will tell me what is right to do, rather than someone in a white coat that relies on an inaccurate blood test!

Mel

Lina13 profile image
Lina13 in reply to BadHare

Thanks for your reply, Mel.

Like you I have been taking basal morning temps for a long time now and mine are higher than yours but still low. They never get over 36.3C and the last month or so they have been consistently 35.6-35.8. During the day or at night they are higher though. I am also cold most of the time. When I do get hot I get too hot, there is nothing in between, feeling just fine! I struggle through the winters and as you said, only a very hot shower/bath can make me warm but soon after I get cold again. My heating bills are enormous!! If taking NDT can help with feeling warmer I will save a fortune! Socializing with other people who have normal 'thermostats' is usually a pain, because when I am comfortable they are complaining of the unbearable heat...

Why do you have decided to add T3? is it because you think you might do even better than with only NDT or are you planning to switch to T3 only? I do not know much about T3 but it seems a lot of people in here are taking T3 only. Would be nice to hear how it goes for you.

Wish you the best,

Lina

BadHare profile image
BadHare in reply to Lina13

Thanks Lina!

I cannot bear very hot weather, & my skin burns within 20 minutes during the day in summer. I'm hoping I am more heat & sun tolerant this year, as several of my skin issues have been reduced on NDT.

I'm only going to try T3 as it's cheaper, & as a vegetarian, taking NDT is repulsive! I'm going to take half of each, initially, to see how I feel, hopefully starting next week. It's hard to break up my 2 grain WP into 1/8 doses. I think 25mcg of T3, which I think is a little higher than 1 grain of WP, may be just right as 1 1/4 is usually enough, but someties 1 1/2 grains of WP feels too much.  I'll try to remember to let you know if it works out after a month.

It's really wonderful not feeling cold!

I hope you're feeling much better soon!

Mel

Lina13 profile image
Lina13 in reply to BadHare

I have always loved the heat but find that I can't tolerate it as well as I used to. Must be lovely to feel warm! But feeling too warm is not so nice either, I get that.

I have many skin issues too, what kind of yours have been reduced on NDT? I am really hoping to see an improvement in my dry, flaking skin, rosacea and eczema. They are mild but bother me a lot. I can't even splash water on my face anymore! I also have many white spots and pink thick, hard like spots, don't know how to describe them.

I didn't think of the issue of being a vegetarian and taking NDT, sorry! I hope the T3 will work for you. I would love to hear more about how it works for you later. Do you have support of a doctor or are you self medicating? I find it a little lonely to be all on my own with this, no doctor support anymore since the doctor I used to see retired (and she was so-so) and I haven't been able to find any who will listen and take me seriously. After many years of being thrown around in the health care system my trust in doctors is very low... I have been diagnosed with depression, fibromyalgia and stress syndrome or doctors tend to take one symptom alone and treat it like a standalone.

Well I have hope for the first time in a long time!

Keep me posted of your progress and hopefully, improvements!

Lina

BadHare profile image
BadHare in reply to Lina13

Hi Lina,

My heels & lips are no longer cracked, & I my feet don't blister as easily. Have you tried witch hazel for your face? I infuse it with oats & squeeze out the oatmilk to put in a spray bottle. It's soothing for sensitive skin & sunburn.

I am self-medicating, but told my doctor that I was going to take NDT in advance. He thought I'd be wasting money on "snake oil", but six months later, agreed I look better. I'm looking forward to getting my next set of blood tests results from my hospital, & hearing what the endocrinologists have to say.

Medical staff rarely see people as a whole being, & only care about their portion of your body, if they care at all. My depression, FM, & hypo symptoms are reduced, thanks to advice of people on here with regard to NDT & nutrients. It certainly seems to be the best place for support & advice for people like us. I feel sorry for everyone struggling with their help & no support, that don't know where to turn.

Are you planning on trying your NDT soon? It's the most positive thing I've done to help myself for a long time! Be brave, & take it slowly!

Mel x

Lina13 profile image
Lina13 in reply to BadHare

Hi Mel,

No, have never tried witch hazel. I have become very restrictive with what I put on my face due to these problems and strong reactions. I use mostly almond oil or coconut oil for moisture but even that give me reactions. Even when just showering and getting water near my face cause a reaction. Just washing my hair is a pain, I always have to have several hours so I have time for the redness to calm down before going out.

Must be nice to have a doctor that at least will let you have blood tests. I can't even get that anymore so I will have to pay for private tests in the future.

I am very grateful for this forum though. It has helped me so much already, and is the reason I am even thinking of self treating. I started my NDT trial yesterday, yay! ;-) 1/4 Thiroyd and I will go slowly and try to be patient. Also taking vitamin and mineral supplements as recommended on here. I do think I feel a little better the last month doing just that.

It is very encouraging to read about your improvements on NDT. So you also have fibromyalgia symptoms? Hope they will soon vanish!

Lina

BadHare profile image
BadHare in reply to Lina13

Hi Lina,

I've found witch hazel, & two brands of French oat based moisturisers to be the most help. I get perioral dermatitis sometimes, but my skin is usually not so sensitive as yours.

It's an endocrinologist that I see for blood tests, & they're not so good. Despite having a pituitary adenoma, they ignore my secondary hypo symptoms, hence self-medicating. I haven't told them about the NDT yet. :D

The FM muscle aches are generally less, I'm sure from being warmer, but not so my hypermobile & arthritic joints. I need a new body!

I hope you feel better with NDT. I noticed no change until I'd got up to 1 grain, but best to take it slowly, so your body has time to adapt.

Mel x

Lilian15 profile image
Lilian15

You say you have Armour and Thyroid-s.     I take Armour and have been for many years now, quite successfully.   I tried Thyroid-s and found it to be much weaker than Armour.    In fact I had to add the same amount of T3 to Thyroid-s that I did when I was taking levothyroxine.     So please be aware, do not mix and match with them.   Try the Thyroid-s first to see how you get on, as if you get on with that OK then it is much cheaper than Armour.

Lina13 profile image
Lina13 in reply to Lilian15

Hi Lilian, I misspelled. I have thai Thiroyd, not Thyroid-s. I wanted to try Thiroyd first as it seems weaker and maybe later Thyroid-s. I also have Armour from a US friend. But as I don't know if I can easily have a steady supply of Armour I decided to go with the thai brand first. Just started the Thiroyd today, very small starting dose, 1/4 pill, seeing that I often react strongly to many things. Will increase the dose slowly.

Lilian15 profile image
Lilian15 in reply to Lina13

I thought thyroid-s was weaker than thiroyd.    When I tried thyroid-s I needed to add as much T3 to it as I was with levothyroxine.    So far me thyroid-s was no better than levothyroxine.    Someone told me I should try thiroyd because that was stronger.    However, I am far better off with Armour, but it is more difficult to get and far more expensive. 

Lina13 profile image
Lina13 in reply to Lilian15

I am not sure, I think I read somehwere that Thiroyd is a little weaker but I may be wrong! Thiroyd is supposed to be similar to Erfa, contain 8,3 mcg T3 and 35 mcg T4. Think the content in Thyroid-s is 9 mcg T3 and 38 mcg T4? As in Armour? I chose Thiroyd because it seemed to have less fillers and other ingredients, also because it was cheaper ;-)

Yes, Armour seems to be much more expensive and more difficult to get. Do you have a prescription? I just got mine from a friend who only takes half her dose and is fine with that although she gets prescriptions for double the dose. So have no idea how expensive it is really.

Lilian15 profile image
Lilian15 in reply to Lina13

I do not know what they contain.   When I first started with T3 the dose I was my best at was 40mcg liothyronine and 100mcg of levotyroxine.

When I changed to Armour I found I was best on 4 grains (240mg), which said on the bottle T4 is 152 mcg and T3 is 36 mcg.    However when I tried Thyroid-s I found it was only when I added 40 mcg of T3 with 4 grains that I felt the same.   As that was the same amount of T3 I was taking with levothyroxine I did not see the point in me continuing with Thyroid-s.    I cannot speak for any other NDT (except Erfa which I found the same as Armour).   Many people find Thyroid-s suits them well.    It just didn't do anything for me, and if Thiroyd is weaker still, I cannot see me trying that.    

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