New Results and GP didn’t not think to inform m... - Thyroid UK

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New Results and GP didn’t not think to inform me...

lisa148 profile image
41 Replies

First came on here at beginning of year when I was borderline hypo was advised to get my antibodies checked which I did privately and turned out ok but I was borderline Vitamin D deficiency.. when back to GP and got bloods done again and was advised over they were the same.. I went today to get a copy and it turns out they are not the same I am low on B12 and folate plus pre menopausal.. why would they not tell me this I will post my results. I think these are significant changes that I should have been made aware of considering I am trying to managing the symptoms associated with all these. Any advice would be very much appreciated as this is my only source or knowledge and support.

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lisa148
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41 Replies

Hi lisa148

Seems you're hypo with over range TSH and low FT4

So, levo should help here

B12 is ok at mid-range and yes folate is low

So folic acid should help

All the best!

Alps

lisa148 profile image
lisa148 in reply to

Hi Alps

Thank you so much for your reply but GP is not giving me any medication or supplements..

Lisa

FancyPants54 profile image
FancyPants54 in reply tolisa148

That's normal. We have to buy our own supplements and if necessary we sometimes have to buy our own medications. But I can't tell about that as I can't read a sideways picture like that.

lisa148 profile image
lisa148 in reply toFancyPants54

I will try and repost with it round the other way!

JAmanda profile image
JAmanda in reply tolisa148

I’d go in with a full list of symptoms - the Nice advice does say Dr s can prescribe a trial of Levo if symptoms persist. Levo isn’t v expensive for them to prescribe. If no luck I’d buy my own! You could even gently suggest you might do that as you’re desperate but would really prefer to have it under their supervision... butter them up! I did something similar.

mountainice profile image
mountainice in reply toJAmanda

Didn't work for me. Worth a try.

Cazzingthyroiduk profile image
Cazzingthyroiduk

Hi, it's hard some times as , unfortunately the illness don't go. You can try lots of different methods to try to help yourself improve. I have been doing this for over 20 years. I have found a breakfast that is full of vitamins and folic acid,protein, zinc,magnesium. All the fibre and low salt and no added sugar. It's mornflake mighty oats original heart healthy oatbran. I found it in sainsburys. £2.50. I liked the bit about activity helps lower cholesterol. I think it might help to start the day healthy.

lisa148 profile image
lisa148 in reply toCazzingthyroiduk

Hi cazzingthyroiduk

I will get some of this and give it ago I do eat a well balanced diet and try and keep fit but it a struggle when I feel so tired and fatigued.. Many thanks for this!

Lisa

greygoose profile image
greygoose in reply toCazzingthyroiduk

Low salt is not good. Your adrenals need salt. Your whole body needs salt, but especially the adrenals.

Why would you want to lower your cholesterol? Low cholesterol is more likely to give you a heart attack than high cholesterol In fact, high cholesterol does not give you heart attacks or strokes. Your body needs cholesterol, that's why the liver makes it. You don't get it from food, and food won't lower it, the liver will just make more.

So, low salt and cholesterol-lowering whatever are not healthy at all.

Cazzingthyroiduk profile image
Cazzingthyroiduk in reply togreygoose

Hi greygoose, I understand that the body needs salt .I put salt on dinner. I do not want a heart attack or a stroke. I need to lower cholesterol so I can lose weight.which helps the heart. The body can carry to much cholesterol,which is not good, lowering cholesterol can stop a build up of fat in the heart. You are right the liver does a great job working with the international organs and produces cholesterol. If this is not good for you do not do this. Thank you for your reply

greygoose profile image
greygoose in reply toCazzingthyroiduk

Of course you don't want a heart attack or a stroke. Nobody does, but neither salt nor cholesterol has any connection with either.

Cholesterol has nothing to do with your weight. Lowering cholesterol won't make you lose weight - and higher cholesterol doesn't make you put on weight. There's no connection except that they're both symptoms of the same disease: hypothyroidism. That's why you've put on weight, because you're hypo. That's why you have high cholesterol, because your FT3 is low.

The liver makes sure your body always has the same total amount of cholesterol. If you eat a lot, the liver makes less. If you eat less, the liver makes more. The problem is that when your T3 is low, your body cannot process and eliminate cholesterol correctly, so it builds up in the blood. Increase your T3 and the cholesterol will go down.

lowering cholesterol can stop a build up of fat in the heart.

No it can't. Cholesterol has nothing to do with fat. They are too entirely different substances and one does not magically change into the other when you eat it.

I don't know where you've been getting your information, but some of it is rather strange. I would suggest you look up Dr Malcolm Kendrick and read his blog and book. :)

Cazzingthyroiduk profile image
Cazzingthyroiduk in reply togreygoose

Hi, I will check with the doctor, But I will do exercises 😀

greygoose profile image
greygoose in reply toCazzingthyroiduk

Doctor won't know. Doctors don't learn anything about nutrition in med school. And, he will probably want to put you on statins if your cholesterol is high, which would be a very bad idea.

Cazzingthyroiduk profile image
Cazzingthyroiduk in reply togreygoose

Ok, good point, I will do exercises and eat fresh foods. I will not bother the doctor as I really do not want to take more medication. I will also sleep more as exercises make me sleep thank you.😀

greygoose profile image
greygoose in reply toCazzingthyroiduk

You're welcome. :) But, go easy on the exercise. If your FT3 is low, you'll do yourself an injury.

lisa148 profile image
lisa148 in reply togreygoose

Ain’t that the truth! This forum is a god sent anything I have learned about my condition is from the tremendous people on here, truly grateful for all the knowledge..

mountainice profile image
mountainice in reply togreygoose

My husband husband's on statins, I be wish he wasn't. He had a TIA - mini-stroke

greygoose profile image
greygoose in reply tomountainice

:'(

Marz profile image
Marz in reply tomountainice

High Homocysteine is more indicative of strokes and heart issues than cholesterol - probably why they do not test for it as it is resolved with the B vitamins :-(

Maybe it can be tested privately ...

When researching plaque - pre-statins - they found Homocysteine and cholesterol. The Hcy research was buried ....

mountainice profile image
mountainice in reply toMarz

He has a small piece of plaque in his neck

Marz profile image
Marz in reply tomountainice

So sorry to read that ... has he had his B12 - Folate checked ? Am sure you have been on the case on his behalf. Hope all goes well for you both ....

mountainice profile image
mountainice in reply toMarz

Yes, I have been nagging and nagging to get blood tests. he was supposed to ask recently when he went for a water infection - and forgot! I ask you....

Marz profile image
Marz in reply tomountainice

Oh dear ! I think many men apply selective memory when it comes to matters medical !! I write it down for hubby - a bit like the shopping list !

janeroar profile image
janeroar in reply togreygoose

Brilliant stuff. 99.999% doctors probably don’t know this. Such a shame. Glad for us greygoose does 😊

FancyPants54 profile image
FancyPants54 in reply togreygoose

I'm a big fan of Dr Kendrick, but also have read widely about cholesterol over the years and agree 100% with what you have said here. It's not the terrible danger we have been led to believe. There's very little we can do to alter it if we are hypo, and pre TSH blood test days, rising or high cholesterol was about the only blood test available to doctors to diagnose hypothyroidism if they were not listening to the patient's symptoms.

The last thing we need to do is eat low fat, low salt or other strange ideas. And we most certainly don't need statins.

greygoose profile image
greygoose in reply toFancyPants54

Totally agree with all you say. :)

holli152 profile image
holli152 in reply togreygoose

Thank you so much for suggesting we look up Dr Malcolm Kendrick, found him really interesting and have learned so much 👍

greygoose profile image
greygoose in reply toholli152

Oh, I am pleased! Glad to have helped. :)

Cazzingthyroiduk profile image
Cazzingthyroiduk

That's great😀

SlowDragon profile image
SlowDragonAdministrator

So you have folate deficiency and GP should prescribe folic acid

But you may better off supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) may be more beneficial.

This can help keep all B vitamins in balance and improve low B12 too

chriskresser.com/folate-vs-...

Many people have MTHFR gene variation and can have trouble processing folic acid.

thyroidpharmacist.com/artic...

B vitamins best taken after breakfast

Igennus Super B is good quality and cheap vitamin B complex. Contains folate. Full dose is two tablets per day. Many/most people may only need one tablet per day. Certainly only start on one per day (or even half tablet per day for first couple of weeks)

Or Thorne Basic B or jarrow B-right are other options that contain folate, but both are large capsules

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before any blood tests, as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

How low was vitamin D

Have you had levels retested?

If not do so here

vitamindtest.org.uk

lisa148 profile image
lisa148 in reply toSlowDragon

Hi thank you so much for replying, can you see my previous posts with my vitamin D levels? This was done by medichecks as advised after 1st diagnosed and I wanted to check my antibodies which came back normal.

SlowDragon profile image
SlowDragonAdministrator in reply tolisa148

yes vitamin D was 40nmol

healthunlocked.com/thyroidu...

GP should have prescribed 1600iu everyday for 6 months

But probably easier just to self supplement

GP will often only prescribe to bring levels to 50nmol.

Some areas will prescribe to bring levels to 75nmol

leedsformulary.nhs.uk/docs/...

GP should advise on self supplementing if over 50nmol, but under 75nmol (but they rarely do)

mm.wirral.nhs.uk/document_u...

NHS Guidelines on dose vitamin D required

ouh.nhs.uk/osteoporosis/use...

But improving to around 80nmol or 100nmol by self supplementing may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Once you Improve level, you may need on going maintenance dose to keep it there.

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function. There’s a version made that also contains vitamin K2 Mk7

It’s trial and error what dose we need

Calculator for working out dose you may need

40ng/ml = 100nmol

grassrootshealth.net/projec...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

Vitamin K2 mk7

betterbones.com/bone-nutrit...

healthline.com/nutrition/vi...

SlowDragon profile image
SlowDragonAdministrator

Suggest you check vitamin D levels

Improve low B vitamins and retest FULL THYROID in say 8-10 weeks via Medichecks

Guidelines to say if TSH over 5 and symptomatic...offer trial of levothyroxine

See flow chart

gp-update.co.uk/Latest-Upda...

Ask GP for ultrasound scan of thyroid

Partner20 profile image
Partner20

Your GP has actually been negligent regarding your folate and TSH levels, because they have been flagged up as abnormal by the lab, and it states that your GP has been notified. This is a matter that needs addressing with your GP, and a complaint made to the practice manager if nothing is done. A folate supplement and a starter dose of levo should be given without question. Vitamin and mineral supplementation is understandably only prescribed for those who are actually deficient, so if levels are simply low, we must buy our own. Not sure where you have been tested as pre-menopausal? Anyway, contact your GP asap to get things moving. Good luck!

tattybogle profile image
tattybogle in reply toPartner20

Talk of negligence and complaint to practice manager is over the top in this case.

It's not correct to say a starter dose of Levo should be given without question on lisa148's results;

With 2 over range TSH's 3 months apart, and FT4's still within range ,the NICE guidelines for treating sub -clinical hypothyroidism state that if there are symptoms , the GP MAY CONSIDER a trial of Levothyroxine. to see if getting TSH back into range improves symptoms .

edit; lisa148 , if you need the link to Nice guidelines i can find it for you

Partner20 profile image
Partner20 in reply totattybogle

It is certainly negligent for a GP not to inform a patient of something that has been flagged up to them in writing as abnormal and meriting attention. This was my main concern. Also, with more than one above-range tsh result and symptoms, guidelines state that a trial of levo can be offered. Of course one slightly raised result should not indicate immediate medication, but more than one abnormal result and symptoms does.

tattybogle profile image
tattybogle in reply toPartner20

I don't disagree with your thinking , but from GP's perspective the flagged information is for HIS consideration , not the patient's , however much we would wish otherwise. And the operative words in the guidelines re. a trial of levo for sub-clinical hypo are 'can' and 'may' , there is no mention of 'should'. So i still think 'negligent' is likely to be unhelpful in getting better communication with said GP.

Partner20 profile image
Partner20 in reply totattybogle

I stand by my ooininion that the GP has been negligent as that information was not disclosed as a private matter, but for the benefit of the patient. It is no secret, otherwise we would not be able to access this information, to which we are entitled. Even if the GP knows their patient has accessed their results, they have no way of knowing if their patient understands them, and so contact should be made to explain and, if necessary, reassure. I would be more than unhappy if my GP had been in possession of information that they had not shared with or explained to me. Such omissions can be dangerous, and lead to future health problems if not followed up. Thank goodness my GP is a communicator, and does not treat me or my family in the way that some GPs seem to treat their patients. The fact that the poster has returned more than one out-of-range result, and has presented as symptomatic, should have been addressed. Actual deficiencies should always be prescribed for, or, at the very least,bdiscussed and tested again. There is no excuse for ignoring deficiencies whatsoever; that is definitely negligence.

tattybogle profile image
tattybogle in reply toPartner20

just realised folate is actually below ref range . apologies. didn't have my specs on sideways. Yes, i agree that should have been mentioned.

lisabax profile image
lisabax

Lisa, you've had a lot of replies, so I don't want to add anything really, except to say it always amazes me that TSH has a reference range which is usually something like 0.5 - 4.2, yet doctors want to wait until the TSH is 10 before they will prescribe thyroxine. Others who have replied have said that if you are symptomatic, and your TSH is outside the reference range, which yours is, then GPs may trial thyroxine. I don't understand their reluctance, but it is worth a try - you could always write and quote the NICE guidelines:

"Treating subclinical hypothyroidism

1.5.2 When discussing whether or not to start treatment for subclinical hypothyroidism, take into account features that might suggest underlying thyroid disease, such as symptoms of hypothyroidism, previous radioactive iodine treatment or thyroid surgery, or raised levels of thyroid autoantibodies.

Adults

1.5.3 Consider levothyroxine for adults with subclinical hypothyroidism who have a TSH of 10 mlU/litre or higher on 2 separate occasions 3 months apart. Follow the recommendations in section 1.4 on follow-up and monitoring of hypothyroidism.

1.5.4 Consider a 6-month trial of levothyroxine for adults under 65 with subclinical hypothyroidism who have:

a TSH above the reference range but lower than 10 mlU/litre on 2 separate occasions 3 months apart, and

symptoms of hypothyroidism."

Hope this helps

LisaB

Lovecake profile image
Lovecake

I 100% agree with Slow Dragon about the cholesterol levels.

My level had gone up when my thyroid issues were first diagnosed. They naturally reduced once I was medicated and my TSH came down, FT4 and FT3 went up.

You might find that if your thyroid levels are not right for you, then losing weight will be extremely difficult and not even helpful. Your body will want the extra energy from food if it’s not getting it from the thyroid.

If my levels are good I seem to crave less food, can do a bit more and the weight stays reasonable (I’m not one for lots of exercise like jogging etc, but that’s just me).

Keeping the levels good is the biggest juggling act for me.

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