blood tests

[Filicatlasy]

I have just been told by my endo that the standard of care in Scotland is now to test TSH only. Read this as thyroid effect 2 times more women than men so we can cut that budget. I am already battling on so many fronts with so many specialists that I dont have the energy for this. I am on a massive dose of Levo which has increased in the last year from 150mcg to 300 mcg. They won’t prescribe T3 which I lived perfectly on due to a heart attack in 2018 and stents in 2020. Could someone private message with the details of the labs that do the tests please.

[helvella Administrator]

Some of the labs available are listed on the Thyroid UK website:

thyroiduk.org/testing/priva...

[Filicatlasy in reply to helvella]

Thanks Helvella, knew they were something, in hospital at present, with a burst disc in my spine which has trapped the sciatic and pinformis nerves.lots of pain and confusion

[Calceolaria in reply to Filicatlasy]

Gods! You poor lass - as if you didn’t have enough to cope with. Hope they get that pain managed asap!

[SlowDragon Administrator]

Just testing TSH is bonkers

Bloods should be retested 6-8 weeks after each dose change or brand change in levothyroxine

Very important to test vitamin D, folate and ferritin at least once year minimum especially as you have lots of autoimmune diseases

Lower vitamin levels more common as we get older

For good conversion of Ft4 (levothyroxine) to Ft3 (active hormone) we must maintain GOOD vitamin levels

What vitamin supplements are you taking

Also VERY important to test TSH, Ft4 and Ft3 together

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test and last dose levothyroxine 24 hours before test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Post all about what time of day to test

healthunlocked.com/thyroidu...

Testing options and includes money off codes for private testing

thyroiduk.org/testing/

Medichecks Thyroid plus BOTH TPO and TG antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes BOTH TPO and TG antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Only do private testing early Monday or Tuesday morning.

Tips on how to do DIY finger prick test

support.medichecks.com/hc/e...

Monitor My Health (NHS private test service) offer thyroid and vitamin testing, plus cholesterol and HBA1C for £65

(Doesn’t include thyroid antibodies)

monitormyhealth.org.uk/full...

10% off code here

thyroiduk.org/testing/priva...

Here’s link for how to request Thyroid U.K.list of private Doctors emailed to you, but within the email a link to download list of recommended thyroid specialist endocrinologists who will prescribe T3

Ideally choose an endocrinologist to see privately initially and who also does NHS consultations so that might eventually transfer to getting T3 on NHS

thyroiduk.org/contact-us/ge...

[Filicatlasy in reply to SlowDragon]

Hi Slow Dragon I know all of this and am spending considerable amounts of my time looking at the linkages and causalities between thyroid autoimmune disease and other autoimmune diseases such as coeliac, pernicious anemia (Vit B12) parathyroid, rheumatoid arthritis and many other autoimmune diseases to convince the NHS that they seriously need to put in place auto immune department with diagnostic capabailities. There are too many of us running from department to department getting very conflicting information.

[Wua13262348 in reply to Filicatlasy]

I am in Scotland and in the last few days am trying to do something about this and a few other gripes we all have . Which Scottish Health Board are you in?

You should watch this video:vimeo.com/891099138/4150efa.... and attempt to see if this doctor is accepting Zoom consultations currently. I think at the end of the video it says to contact Cytoplan in relationship to this and they will either pass you on to him, or be able to tell you if a Zoom meeting is possible at this time.I think he will be able to interpret an OATS test if you paid for one. They are expensive (£300ish). A cheaper alternative would be a hair analysis test (£100ish with comments). You may get a broad insight into vitamins and minerals you may be deficient in, or too high in. He is very knowledgeable re. B12, a qualified G.P., but also trained as a functional doctor. I think you will be impressed by the video. It involves a monetary outlay which may be beyond your means. If you can possibly afford it, I believe he will be worth consulting. I was very impressed by the video. He will likely have knowledge of all your various autoimmune diseases, and getting you adequate B12 treatment in the active forms will probably be top of his list. The thyroid needs Vit b12 to work properly.

I sympathise with your current dilemma and can empathsise with it . I had a prolapsed disc firmly trapping my sciatic nerve for at least 7 years. Eventually I had the disc shaved. I believe the entrapment of the nerves and degeneration of our spines is the result of long term B12 deficiency and hypothyroidism. He stresses and understands the importance of B12 and your B12 injections will be too infrequent , and need to be ideally, adenosylcobalamin and methylcobalamin.

I hope they are giving you plenty of pain relief in hospital, and really am sorry that the NHS is so poor at dealing with even one of your problems, let alone the others you have to bear.

Monitor My Health can send you finger prick tests to test your thyroid and you are actually paying the NHS to test your blood. Randox health seem to be cheapest most of the time. Hope things improve for you soon.

Just to clarify. Are you saying that endocrinology will no longer test anything but TSH?

[Filicatlasy in reply to Wua13262348]

As a pensioner most of that is way beyond my budget. Yes I am saying that all they are now prepared to test is TSH

[Wua13262348 in reply to Filicatlasy]

what health board are you in?

[CatLady246]

I am in scotland and myGP would not test anything but TSH he said their hands are tied. I paid for tests to be done. More so for my peace of mind it cost me £72 for a full thyroid panel test with a discount. I do not agree we should have to pay, to be honest, but I know th NHS can only do so much. Hence paying myself. I had the results back in 48 hours and my Free T3 was well within range there were other tests too but I wasn't sure if you are allowed to put them on.

It isn't to make peole go and pay. I just wanted to let you know I chose to pay so I knew exactly what was going on. Worth it for me. But if you have a great Dr maybe they will do them.

Test

[SlowDragon Administrator in reply to CatLady246]

CatLady246

Suggest you make a new post with these results

Free T4 (fT4) 16.7 pmol/L (12 - 22) 

Ft4 only 47.0% through range

Free T3 (fT3) 4.4 pmol/L (3.1 - 6.8) 

Ft3 worse at only 35.1% through range

Inadequate dose levothyroxine

Folate deficient

Vitamin D insufficient

No ferritin or antibodies results visible

Improving vitamin levels to GOOD levels should improve conversion rate of Ft4 (levothyroxine) to Ft3

[CatLady246 in reply to SlowDragon]

What should the results be. I know vitb is low it was 840 and just dropped from March vit d no idea why that is low its always been at top of range and I am just back from Tenerife. .

I did have an NSTEMI in March not sure if some meds I am on are depleting them

I have only ever had my free t3 and t4 done once by Endocrinologist a few years ago and they were very similar numbers.

My optimum level for TSH is 0.3 so that's a bit high for me so will that impact the other 2 numbers?

Thank you for your information though

Many thanks

[SlowDragon Administrator in reply to CatLady246]

Low Ft3 (especially) and low Ft4 will both result in low stomach acid, this leads to poor nutrient absorption

Being on inadequate replacement thyroid hormones almost always results in low vitamin levels

Many thyroid patients find they need significant level of vitamin D supplement daily, plus separate magnesium (in afternoon or evening at least 4 hours away from levothyroxine)

Plus daily vitamin B complex

Sometimes a separate B12 (not in your case)

And many struggle to maintain good iron/ferritin

Low vitamin levels tend to lower TSH because this results in poor conversion of Ft4 to Ft3 ….so Ft4 is higher % than Ft3

Absolutely essential to test and maintain OPTIMAL vitamin levels

Vitamin D at least over 80nmol

Serum B12 over 500

active B12 (as above) over 100

Ferritin at least over 70

always retest TSH, Ft4 and Ft3 together

Many (most?) members find they need BOTH Ft4 and Ft3 at least 60% through range (regardless of TSH )

[CatLady246 in reply to SlowDragon]

That makes total sense why now. I am on bisopropol Lansoprozole Isosorbide mononitrate and aspirin after my heart attack and ramipril on evening. I have Drs next week so will go over the results with them. These must be affecting things

[SlowDragon Administrator in reply to CatLady246]

PPI - Lansoprazole will dramatically lower vitamin levels

You will need significant supplements

gov.uk/drug-safety-update/p...

webmd.com/heartburn-gerd/ne...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

Iron Deficiency and PPI

medpagetoday.com/resource-c...

futurity.org/anemia-proton-...

onlinelibrary.wiley.com/doi...

sciencedirect.com/science/a...

[Fruitandnutcase]

I’ve found it is the same here in the south of England. I had one practice nurse years ago who looked at the results and was irritated that they had only tested TSH. She said she would talk to the doctor about it - then she ‘retired’ shortly after that and I left that practice.

I do my own blood tests now and I don’t bother to tell my doctors I’ve found it’s the easiest way. I kind of grudge the money - but you can’t rely on your doctors doing anything these days - that’s if you can even get to see one.

[Jaybrooke]

I found even on high dose 300 mgs thyroxine I was still very unwell lots of symptoms still . Wasn’t allowed a trial of t3 or armour natural dessicated thyroid. Which is the normal in the uk I struggled on for years eventually after a lot of research I decided to self medicate my choice was thyrogold (dr John Lowe) it has t4 , t3 + sadly he has passed on but his wife continues his work . Amazing the difference it made to my life . It is similar to armour only from cattle rather than pig , I take it your doctors or endocrinologist won’t give you a trial of armour .Perhaps worth researching ??

[humanbean]

Read this as thyroid effect 2 times more women than men so we can cut that budget.

In this link : healthywomen.org/your-healt...

it says :

Statistically, women are as much as five to eight times more likely to develop a thyroid problem compared to men.

Five to eight times more women than men is quite a common estimate. I've never seen only 2 times before.

[schrodinger]

Where about in Scotland are you? I'm in Aviemore and have no problems like that, my surgery regularly checks TSH & T4 while I get a private test done once or twice a year. I was quite surprised recently to be offered a T3 trial by the endo at the local gen hosp.

[arTistapple]

You were on T3 and it was removed? In England TaraJR was collecting these statistics. I know the Scots have a separate NHS but it’s really the UK NHS.

You mention all the other things gone wrong. It just amazes me, presumably for someone’s convenience, that medics just can’t make the connections. The amount of money being utterly squandered by lousy treatment of hypothyroidism is probably bringing the NHS to its knees- along with the patients.

I have in-laws who are hypothyroid who never knew they were. No symptoms(apparently) and found by blood tests only. Take their medication with no complaints. Maybe it’s just those patients the NHS wants. However, they have had hip replacements. Heart problems. Bowel problems. HBP. CKD. Breathing problems. Muscle issues. Lack of energy. Sleeplessness. I could go on!!

Is it just a certain type of patient who cares about and attempts to take responsibility for their own health that frankly is a nuisance to the NHS and the medical profession?

It seems that the ‘dunderheads’ prevail.

I am referring to doctors in the above statement.