I'm not right

[Lionmess]

1st post, eager learner, 56yr old Female.

I feel like I've run marathons, so lethargic, so many aches and pains. I was diagnosed Hypo in 2015 and gradually ended up on 100mg Levo. The most recent Drs results are below, typically not the tests you want but all that was done on NHS. I have one test for Free T4, B12, Ferritin going back to 2014 though.

22.3.19 on 100mg Levo. TSH - 4.61 Range 0.35-4.94

At this appointment, GP said I was "perfect!". Well according to all I read here, that is not the case

I had a test on 6.7.18, which was the 1st test after upping my dose to 100mg and all my Dr said was that my dose was a bit high, there are no numbers on my file.

11.4.18 on 75mg Levo. TSH - 7.85, B12 - 224 Range 187-883pg/ml, Serum Folate - 9.8 Range 3.5 -20.5ng/ml

I requested an increase of Levo at this point as I knew I was under treated and that HRT can mean that higher dose of Levo is needed.

When I originally presented my symptoms in 2015, I was expecting simply to be told I was peri-menopausal and told to get on with it. In fact I was referred to the local Endo who seemed impressed that I didn't feel much worse. I've requested these results but been told they are not available at my GP's.

I'm going to do a Private Test

My questions for you are:

I keep seeing advice to take bloods early before Levo. Does this mean that tests at Dr's at 9.30am fasting and without taking Levo for 24 hours previous will have given a misleading result?

I have been trying to improve my energy levels taking B & D vitamins, presumably I should not take these for a while before doing the Private Blood Test?

No Dr has ever touched my throat, how would I know if I had a problem other than hormone levels?

Because I had done some Googling of Hypo, I asked the Endo when I last saw him back in 2016 what the difference was between Hashis and Hypo and he said it was the same thing!

I'm on HRT - half patch since July 2017 and diagnosed with Familial High Cholesterol by same Endo 2015.

In 2016 I was 56kg, now I'm 72kg even though I have transformed my diet and exercise behaviors in the vain hope I could turn the numbers around without more drugs.

Thank you for this amazing font of info and making me feel less like a lone warrior.

[SlowDragon Administrator]

Welcome to the forum.

Yes you are correct, on Levothyroxine TSH should be under 2. Many of us need a TSH under one. FT4 in top third of range and FT3 at least half way in range

Just testing TSH is completely inadequate

You need to stop any supplements that contain biotin for 7 days before any blood tests. Most B complex contain biotin

Vitamin D, just don't take on morning of test

If taking iron supplements, stop these a week before testing

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 Thyroid antibodies are raised

Hypo and Hashimoto's are not the same. Most medics are completely confused by Hashimoto's

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning (before 9am ideally) and fasting. Last Levothyroxine dose should be 24 hours prior to 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)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Current Medichecks offer here - 20% off during May

healthunlocked.com/thyroidu...

Official NHS guidelines saying TSH should be between 0.2 and 2.0 when on Levothyroxine

(Many of us need TSH nearer 0.2 than 2.0 to feel well)

See box

Thyroxine replacement in primary hypothyroidism

pathology.leedsth.nhs.uk/pa...

Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine,

"The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l.

Most patients will feel well in that circumstance. But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the articles from Thyroid UK email print it and highlight question 6 to show your doctor

 please email Dionne at

[e-mail]

Come back with new post once you get results and ranges, members can advise on next steps

[SilverAvocado]

I agree with Slowdragon, your TSH is far too high. Its almost the top of the range. Most people on hormone replacement will need it right down at the bottom of the range to feel well.

If your GP says it is perfect then they know nothing about thyroid One option is to shop around doctors and see if there are any other GPs available to you that are any better and will give you a dose increase.

Your vitamin B12 also looks quite low, you need it to be at least 500 to avoid symptoms. A good quality B12 needs to be dissolved under the tongue, and you should take a B-Complex at the same time. People who know more than me on the forum give more specific recommendations, so hopefully you'll find some!

[SeasideSusie Remembering]

Lionmess

You really need more up to date results than these so I'd make sure you get the full thyroid/vitamin panel when doing a private test, either of the following will be good:

Medichecks Thyroid Check ULTRAVIT medichecks.com/thyroid-func... You can use code TUK20 until the end of May for a 20% discount, or after that code THYROIDUK for a 10% discount on any test not on special offer.

or

Blue Horizon Thyroid Check PLUS ELEVEN bluehorizonmedicals.co.uk/t...

Both tests include the full thyroid and vitamin panel. They are basically the same test but with the following small differences:

For the fingerprick test, Blue Horizon requires 1 x microtainer of blood (0.8ml), Medichecks requires 2 x microtainers (total 1.6ml)

Blue Horizon includes Total T4 (can be useful but not essential). Medichecks doesn't include this test.

B12 - Blue Horizon does Serum B12. Medichecks does Active B12.

Serum B12 shows the total B12 in the blood. Active B12 shows what's available to be taken up by the cells. You can have a reasonable level of Serum B12 but a poor level of Active B12. (Personally, I would go for the Active B12 test.)

Either can be done by fingerprick, or if you prefer you can choose venous blood draw at extra cost. The fingerprick is as accurate as a venous blood draw provided it is done properly. If you choose that method, pop back and ask for tips and a video on how to do it.

Based on these results from 11.4.18

B12 - 224 Range 187-883pg/ml,

According to an extract from the book, "Could it be B12?" by Sally M. Pacholok:

"We believe that the 'normal' serum B12 threshold needs to be raised from 200 pg/ml to at least 450 pg/ml because deficiencies begin to appear in the cerebrospinal fluid below 550".

"For brain and nervous system health and prevention of disease in older adults, serum B12 levels should be maintained near or above 1000 pg/ml."

I would have suggested you check for signs of B12 deficiency here b12deficiency.info/signs-an... and if you were experiencing any then I'd have said discuss with your GP and ask for further testing for B12 deficiency/pernicious anaemia.

So see where your new level lies, if you do the Active B12 test with Medichecks UltraVit then anything below 70 suggests testing for B12 deficiency.

Serum Folate - 9.8 Range 3.5 -20.5ng/ml

Folate is recommended to be at least half way through range, so again see where your new levels lie.

Post your new results, with reference ranges and units of measurement for Vit D and B12, when you have them and we can comment.

[Lionmess in reply to SeasideSusie]

Could you point me in the direction of the tips and video for the finger prick test as you recommended. Thanks

[SeasideSusie Remembering in reply to Lionmess]

These are the things that I've found that works for me

* Be well hydrated, drink plenty of water the day before, and before you do the test. * Some people take a shower before hand, some run up and down the stairs to get blood flowing. Personally, as I can't run up and down the stairs, I circle my arm round, windmill style. * Have a bowl full of hot water, dip hand in and out, swish around, hand needs to go red. If blood flow stops, you can always swish round in the hot water again. * Stand up to do the test. Make sure your arm is straight down when collecting the blood. Either use a small step stool to raise yourself well above the work surface, or put the collection tube on a lowish shelf. One member uses an ironing board so she can get the perfect height.

* Prick finger on the side, not the tip. I find that half way between the nail bed and tip is about right, or maybe slightly nearer the nail bed rather than the tip. I use my ring finger, but middle finger is next best for me. * Do not squeeze your finger to get the blood out, it can damage the blood and it may not be usable

I've recently done 2 tests. The first one there was very little blood coming out which was unusual for me so I used a second finger and between the two I gradually filled the tube. However, when I checked the prick site for the first finger the actual cut was very small and as I've had some of these lancets fail before I put it down to that. When I did the second test this week this is what I did * Prick my finger as usual, make a very slight twist with the lancet whilst blade is still in the finger. I'm not talking 90 degrees or anything, just a very slight twist to make the cut just slightly bigger, it doesn't hurt or cause a blood bath! This made a big difference, 11 generous drops of blood filled the tube in less 2 minutes. If you supplement with Biotin, or a B complex containing it (B7), Medichecks have confirmed that they because they use biotin in their assay it's recommended to leave it off for 7 days before doing any blood tests as it can give false results.

youtube.com/watch?v=InHBLT-...(Not working as expected?)

[Lionmess in reply to SeasideSusie]

Fab. Thank you so much

[Lionmess]

Thank you. I planned on the finger prick test with Medicheck and to order on Thursday.

[SlowDragon Administrator in reply to Lionmess]

Currently Medichecks is on offer 20% off everyday with this code

thyroiduk.org

[Hidden]

If you don't want to feel like a lone warrior take a private medichecks blood test called ThyroidUltraVit this is a good test but you would have to take it early, fasting and leave of Levo for 24 hours prior to the test. Then post the results with the ranges on here for answers. I did this myself back in 2016 I now self medicate and do the blood test once year. I feel well again now. I have no thyroid.

[Lionmess]

My test kit just arrived. I was searching for the tips and a video on how to do it as recommended by SeasideSusie. Can you point me in the right direction please?