Update following long-awaited GP appointment fo... - Thyroid UK

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Update following long-awaited GP appointment for results of Thyroid blood test

Izziethecat profile image
37 Replies

Following my last post, I have finally had my GP appointment. I thought it was solely to discuss my annual Thyroid blood test but it seems they had also tested for cholesterol.

Had a long lecture about high LDL and the risk. I explained that I couldn't really do any more to improve it as I already follow a fairly healthy diet, don't drink, don't smoke, I'm quite fit & exercise regularly, not overweight etc etc. Said I didn't want statins and also reminded her that it seems high cholesterol and hypothyroidism go hand in hand as I only developed this since having thyroid issues. Doctor did a risk assessment and concluded that I was at an 8% fairly low risk of heart attack/stroke so did not feel that medical intervention was necessary at present.

She then said that she was going to reduce my Levothyroxine as my TSH is so low at 0.004/ 0.007 (SlowDragon was right!) and that I was in danger of becoming Hyperthyroid which would put my heart and general health at risk. I tried reasoning that I didn't want to upset the balance as, apart from feeling tired at times, I feel relatively well at present and need to be able to function in order to go to work. Also added that, following advice here, I was now taking B12 and Folate to try and improve my uptake of thyroxine. I was told that my TSH level is the worse it has ever been and that it has always been extremely erratic. I was shown a graph of my TSH levels, from around 2006 to date, which had wild variations causing zig zags of massive peaks and troughs.

The result is (despite my protests) that I am to take 100mg and 50mg Levothyroxine on alternate days (instead of 100mg and 75mg). I am to have a repeat blood test in three months time. I asked what was going to happen if I felt too ill on the new dose or if things hadn't improved at the next blood test and was informed that I would be referred to an endocrinologist. I suppose that might be a good result in a way as I haven't been seen in endocrinology for 15 years.

I'm puzzled by this action in that the probable consequence of lowering my Levothyroxine dose will be that my LDL goes even higher and puts me at greater risk of heart problems. Lose/lose situation?

Any thoughts most welcome!

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Izziethecat
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37 Replies
SlowDragon profile image
SlowDragonAdministrator

previous post with full results

healthunlocked.com/thyroidu...

simply refuse to reduce dose as your Ft4 and Ft3 are no where near top of range

Quote these guidelines

If GP says " I have to reduce your dose because the guidelines say i can't let you have a below range TSH" .....

The first paragraph in the NICE (NHS) Thyroid Disease, Assessment and Management guidelines says :

nice.org.uk/guidance/ng145

"Your responsibility

The recommendations in this guideline represent the view of NICE, arrived at after careful consideration of the evidence available. When exercising their judgement, professionals and practitioners are expected to take this guideline fully into account, alongside the individual needs, preferences and values of their patients or the people using their service. It is not mandatory to apply the recommendations, and the guideline does not override the responsibility to make decisions appropriate to the circumstances of the individual, in consultation with them and their families and carers or guardian. "

Explain that you are having ongoing difficulties getting same brand at each prescription

That you want to stay on current dose …..and ensure going forward that brand doesn’t alter

FT4: 18.9 pmol/l (Range 12 - 22)

Ft4 is 69.00% through range

FT3: 5.32 pmol/l (Range 3.1 - 6.9)

Ft3 is 58.42% through range

Improving vitamin levels should improve Ft3 result

Have you done FULL iron panel test yet

As a vegetarian low ferritin is likely

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron

Test early morning, only water to drink between waking and test. Avoid high iron rich dinner night before test

Medichecks iron panel test

medichecks.com/products/iro...

Izziethecat profile image
Izziethecat in reply toSlowDragon

Thank you for your comments and advice SlowDragon.

I really doubt the knowledge & experience of the doctor that I saw. She kept telling me I was on 175mg per day and I corrected her three times saying "I'm not on 175mg. I take 100mg and 75mg on alternate days, so, 100mg one day and 75mg the next."

I've had a look on my notes on Patient Access and she's put a comment to the effect "patient not happy with decreased dose. I have changed prescription to 150mg" so she's still misunderstood or is it me....,

I think I need to see another GP.

No, I haven't had the full iron panel test yet - I had a look at the link and will probably leave it until after Christmas.

TiggerMe profile image
TiggerMeAmbassador in reply toIzziethecat

This could work in your favour if she has changed the script to 150mcg a day... gives you free rein 🤗 how does it appear on your medication page?

Sometimes their incompetence works in our favour 😁

Izziethecat profile image
Izziethecat in reply toTiggerMe

Thanks for that - just checked - 56 day supply of 50mg and 56 day supply of 100mg which would actually suffice for four+ months!

TiggerMe profile image
TiggerMeAmbassador in reply toIzziethecat

😁👏 always handy to have a little in stock 🤗

TiggerMe profile image
TiggerMeAmbassador in reply toTiggerMe

Just thinking... in three months when you retest when actually taking 100mcg a day and they want to reduce your dose you will still be winning as they would drop you to 125mcg 🤣

SlowDragon profile image
SlowDragonAdministrator in reply toIzziethecat

So if you now have prescription for 150mcg daily suggest you keep quiet

As that gives you freedom to increase dose yourself to 100mcg daily

Izziethecat profile image
Izziethecat in reply toSlowDragon

Yes - looks like she's prescribed 150mcg (whoops I've been writing mg) but won't I be overdosing if I take 100mcg? I've got a small supply of 25mcg to even it out.

greygoose profile image
greygoose

Your high cholesterol is not putting you at any sort of risk. It doesn't cause heart attacks or strokes, as doctors claim. And it has nothing to do with your diet. Cholesterol is made in the liver but when FT3 is low, it tends to build up in the blood.

Cholesterol has been discussed many, many times on here. If you do a search you will find many posts about it. Also, there are links to articles about it on my profile. Cholesterol is your friend, not your enemy.

Izziethecat profile image
Izziethecat in reply togreygoose

Thank you for your reply. I will look for the posts and links. However, it seems to me that GPs don't want to consider anything "outside the box". My uncle has repeatedly refused statins much to the annoyance of his GPs and his blood reads and health don't seem to get any worse.

ClareP5 profile image
ClareP5 in reply toIzziethecat

worth getting your uncle to listen to the Zoe health and nutrition podcast on cholesterol- most effective way to deal with high cholesterol is to increase the variety of fruit, veg and other plant whole foods like spelt etc etc. based on proper science and not on new tablet that needs to be sold!

greygoose profile image
greygoose in reply toClareP5

Why would he want to lower his cholesterol? It's not doing him any harm.

ClareP5 profile image
ClareP5 in reply togreygoose

My understanding was that his uncle’s was high - apologies if I misunderstood.

greygoose profile image
greygoose in reply toClareP5

It is high. But that's not a problem. Cholesterol does not cause heart attacks or strokes. In fact, it seems that those with higher levels tend to live longer. Your body needs cholesterol.

ClareP5 profile image
ClareP5 in reply togreygoose

I was recently offered a health check and declined. I’m fit and well. So I have no idea what my cholesterol is. I eat well, I exercise and I enjoy cooking. Don’t need the GP to do some bloods!

greygoose profile image
greygoose in reply toClareP5

Same here. I have only ever once had my cholesterol tested, and it was just 1 point above the top of the range. And, my GP at that time screamed at me that I was 'blocking my arteries!' Silly fool. He didn't last long, I can tell you!

greygoose profile image
greygoose in reply toIzziethecat

There's a huge Big Pharma drive to get everyone on statins, been going on for some years. There was even some discussion about putting children on them! Or adding them to the water supply like fluoride (and don't get me started on that!). And they have continually lowered the top end of the so-called 'normal' range so that more and more people can be put on them.

A friend of mine didn't even have high cholesterol but his GP put him on statins 'just in case'. I explained to him why he didn't need them and he came off them. When his GP found out he was furious! And bullied my friend with horror stories to start taking them again. And the result? Prostate cancer.

Arificially lowering cholesterol with statins will also lower sex hormones, because sex hormones are made of cholesterol. And that puts you at risk for hormone-dependant cancers like breast cancer and prostate cancer. He also became diabetic, which is another side effect of statins.

So, in conclusion, the cholesterol won't hurt you, but the statins probably will!

Izziethecat profile image
Izziethecat in reply togreygoose

That is shocking. The possible side effects seem to outweigh any benefit.

greygoose profile image
greygoose in reply toIzziethecat

There is no benefit. Except to Big Pharma, who are making a fortune out of statins!

ClareP5 profile image
ClareP5 in reply togreygoose

Some friends were offered a free cholesterol test by a company, not the NHS, they were all declared high and recommended to speak to their GP about statins. I told them to get an NHS test, they did and their results were v different.

greygoose profile image
greygoose in reply toClareP5

Really? That's very worrying! Seems Big Pharma will go to any lengths to sell the wretched things!

jgelliss profile image
jgelliss in reply togreygoose

You are so Right GG. My Aunt and Uncle both developed dementia after taking cholesterol medications. Thank you for sharing that cholesterol is not our enemy.

greygoose profile image
greygoose in reply tojgelliss

You're welcome. :)

ClareP5 profile image
ClareP5

self medicate- if the GP won’t look after you, you need to look after yourself. Their current obsession is getting the nation on statins🙈

Izziethecat profile image
Izziethecat in reply toClareP5

Thanks for your comments - it certainly looks that way.

Milkyway88 profile image
Milkyway88

I can’t advise, but I do wonder why, if your gp has gone to the trouble of producing a graph of your wildly erratic tsh, she has only been testing and discussing it with you annually. Glad you’re getting a follow up in 3 months. Hope your local endo is good if you do get referred.

Izziethecat profile image
Izziethecat in reply toMilkyway88

Thanks for your comment - I've spent the last hour and a half trawling through my health records on Patient Access. TSH levels have been noted several times after blood tests but no-one has ever contacted me before. Maybe the other doctors were more appreciative of the whole picture rather than just the TSH.

TiggerMe profile image
TiggerMeAmbassador

I'm with the refusers! Reducing will make you feel crappy for months. Call them or send a message to say you refuse the reduction and would be staying on the current dose until you have spoken to an Endo (which would take months and likely be rejected by Endo anyway) 🤗

Izziethecat profile image
Izziethecat in reply toTiggerMe

Thank you for your advice. Having read what the doctor has written on Patient Access (see my response to SlowDragon above) I'm beginning to doubt her altogether. I've never seen her before - I don't know if she's permanent or a locum, but I think I'm going to try and see someone else. May start with a comment on my medication via the booking system.

Batty1 profile image
Batty1

In my experience yes LDL will elevate more with reduction of thyroid meds and in 3 months time you most likely will still have a low TSH … really wish these doctors could look past the TSH.

Izziethecat profile image
Izziethecat in reply toBatty1

Thank you for your comments. I'm thinking the exact same thing.

serenfach profile image
serenfach

The second she said you are going hyperthyroid was the second she proved her ignorance. You cannot move from one to the other, but you can be overdosed.

Phone the surgery and tell them you do not accept the change in dose, and if they insist on this change, you will be forced to purchase the drugs over the internet. They dont like that!

SlowDragon profile image
SlowDragonAdministrator in reply toserenfach

She kept telling me I was on 175mg per day and I corrected her three times saying "I'm not on 175mg. I take 100mg and 75mg on alternate days, so, 100mg one day and 75mg the next."

I've had a look on my notes on Patient Access and she's put a comment to the effect "patient not happy with decreased dose. I have changed prescription to 150mg" so she's still misunderstood or is it me....,

So …

Currently GP’s ignorance appears to be working in her favour

Izziethecat profile image
Izziethecat in reply toserenfach

Thanks for your response - I'm beginning to despair as the doctor has actually prescribed 150mcg! Is it even possible to purchase over the internet?

greygoose profile image
greygoose in reply toIzziethecat

Well, as she's now prescribing 150 every day instead of 100/75, you're going to be able to stay on the same dose and build up a nice little stash in case you want to increase by yourself. So, you won that round! :) I'd just keep quite about it, if I were you. lol

ClareP5 profile image
ClareP5 in reply toIzziethecat

Thank goodness she’s bad at maths too🤣🤣🤣

serenfach profile image
serenfach

I sometimes wonder what they use those things on the side of the head for!

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