Have given up on GP's: I have just had blood test... - Thyroid UK

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Have given up on GP's

Jenny583 profile image
17 Replies

I have just had blood test results back. A's usual the letter starts with "everything fine"!

Now my thyroids are lower than before, and transferrin saturation is now under range (as is Gamma Glutamyl transferase) in spite of self medicating with iron. My TSH is now under range too, and B12 is still over range. Vitamin D is now just adequate, and adjusted calcium has now just crept into range, in spite of medication. I am having to pay for a spinal x-ray tomorrow, which should reveal if it is my osteoporosis or something else causing the pain in my back.

Could the low Iron be driving my free T3 and T4 down? Most of my hair fell out in September, and my skin has become very wrinkled, I feel a lot less old now, but look very old....

Will soon run out of the T3 that friend gave me. Then I would be bedridden again and bald. As I live in Jersey, I cannot get any help, and I buy a huge array of supplements.

Any advice would be much appreciated.

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17 Replies
SlowDragon profile image
SlowDragonAdministrator

You need to put a new post up asking members to PM you for T3 supply details, then you can order some. It can take some while to arrive so you need to think ahead

Meanwhile if you add your results for TSH, FT4 and FT3 plus do you have high thyroid antibodies

Plus test results and ranges for vitamin D, folate, ferritin and B12 too

Jenny583 profile image
Jenny583 in reply to SlowDragon

They always refuse antibody tests, when I pointed out that I had thyrotoxicosis, therefore probably Graves disease for years, they replied that the records only go back 10 years, and yet noted that I was on maximum dose Carbimazole ( not block and replace) for nearly 4 years in the 80's! I have posted latest results.

I had severe d3 deficiency a few years ago, leading to hyper-parathyroidism, which I diagnosed myself. I don't think they have forgiven me...

Thanks.

SlowDragon profile image
SlowDragonAdministrator in reply to Jenny583

If you're in UK just get private tests. Most of us on here wouldn't have got well without doing this

For full evaluation you ideally need TSH, FT4, FT3, TT4, TPO and TG antibodies, plus vitamin D, folate, ferritin and B12 tested

You are under medicated to have FT4 so low and FT3 is too low as well

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, 12 hours for T3, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

Is this how you did the test?

How much Levo and T3 are you taking ?

FT4 should be near top of range and FT3 at least half way in range

To test antibodies And ferritin use Private tests

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 money off offers.

Jenny583 profile image
Jenny583 in reply to SlowDragon

Thanks

I cannot get a prescription for T3, or anything else, they always refuse antibody tests, they have "lost" my medical records more than once. So I don't know if I ever had hashimoto's or Graves, or tests. I only know, because it destroyed my career, Thyrotoxicosis.

And when I took the donated t3 in the Summer - it was like a new lease of life.

My folate is good - now that I self supplement =12.7 ng/ml ( 2.5 - 17.0 )

B12 is high, I will cut down on my b12.

They don't test ferritin in Jersey, so I have never had one.

I don't know how I can get T3 without script.

They don't test or treat any kind of malnutrition here either, but if you study medicine, endocrinology and advanced nutrition, ( which you can do while your bedridden for years) you might be able to buy a select few blood tests - and then try and figure out how to heal yourself...

Clutter profile image
Clutter in reply to Jenny583

Jenny583,

It doesn't matter that TSH is below range when taking Levothyroxine and T3. I think you are undermedicated to have FT4 10.2 and FT3 4.5. If you are taking T3 only FT4 will be low but most people taking T3 only are optimally dosed when FT3 is in the upper third of range ie 6.8 - 8.1 in your range.

If you want to source T3 without prescription write a new post asking members to send you information where to source it via private messages.

Low GGT google.co.uk/search?client=...

Ferritin is stored iron. Most GP practices use ferritin as a guide to iron status and don't check iron unless ferritin is deficient.

Low transferrin saturation indicates iron deficiency. Your iron is within range but I don't think it will hurt to increase iron to 2 x 210mg daily for 4-6 months and retest. Take iron 4 hours away from Levothyroxine and T3.

Glomular filtration indicates kidney function. 84 indicates very mild loss of function but doesn't indicate kidney disease.

B12 is usually high when supplementing. You could reduce your supplementation to 4 or 5 days a week.

VitD 79 is replete. VitD 100-150 is optimal so you could continue taking D3 until April and retest. Take D3 4 hours away from Levothyroxine and T3.

Calcium Adj. 2.23 is within range. Take Calcium 4 hours away from Levothyroxine and calcium.

You can order home kit blood tests from Blue Horizon and Medichecks via thyroiduk.org.uk/tuk/testin... Medichecks offer #ThyroidThursday discounts.

QUE6T-33 profile image
QUE6T-33 in reply to Clutter

Hi Clutter, you say T3 in upper third of range. Would this be the level on Serem test prior meds or on taking meds ?

Clutter profile image
Clutter in reply to QUE6T-33

QUE6T-33,

When taking T3 only or T4+T3 or NDT.

QUE6T-33 profile image
QUE6T-33 in reply to Clutter

Hi Clutter - you say most feel optimally dosed when their T3 is in upper third of range. What I'm asking, is that level according to Serem test result taken prior daily thyroid meds or when meds taken ? My previous question wasn't that clear - sorry.

Clutter profile image
Clutter in reply to QUE6T-33

QUE6T-33,

It's when you are taking T3, T4+T3 or NDT.

SlowDragon profile image
SlowDragonAdministrator in reply to Jenny583

B12 is fine. Are you taking daily B12 sublingual lozenge

A good vitamin B complex will help all other B vitamins too.

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results

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

endocrinenews.endocrine.org...

Hundreds, if not thousands on here purchase T3 without prescription.

If you put a new post up asking for contact details for T3 members can private message you (PM). It's not allowed to put details on open forum.

Jenny583 profile image
Jenny583 in reply to SlowDragon

Thank you all so much.

I should point out that - as mentioned in previous posts, I am not able to get T3 or Levo, as the DR's here go by TSH only, and my TSH has been steadily decreasing.

I helped a friend to get her T3 script re-instated (by crafty means!) and then she found some old T3's in the back of her cupboard, which she kindly gave me to try. I had malnutrition as well, celiac? Hence all the supplements, including a good B12. So it wasn't just the T3, but I will need to get some more T3. The GP knows I have been taking them.

I can't get private bloods here, so will have to keep learning, monitoring by symptoms, and sourcing, somehow. I will get some more better iron pills. I have just yesterday restarted the biotin.

I can't get a ferritin test but I found this-

Gamma-Glutamyl transerase (GGT): Believed to be involved in the transport of amino acids into cells as well as glutathione metabolism. Found in the liver and will rise with alcohol use, liver disease, or excess magnesium. Decreased levels can be found in hypothyroidism and more commonly decreased magnesium levels.

I will now try and post an appeal for T3!

Bless you

SlowDragon profile image
SlowDragonAdministrator in reply to Jenny583

Why can't you get private bloods? Won't Blue Horizon or Medichecks post to Channel Islands?

Jenny583 profile image
Jenny583 in reply to SlowDragon

From what I can gather you have to get the bloods off within 40 something hours by special delivery, which I am advised by locals is highly unlikely. Only one firm take jersey blood,(via finger prick) but how do you get the blood drawn?

But also - if my TSH and t3 and 4 are low, that would preclude autoimmune wouldn't it?

SlowDragon profile image
SlowDragonAdministrator in reply to Jenny583

No autoimmune is nothing to do with TSH or FT4 and FT3

It’s test for thyroid antibodies

Lots of private clinics can do blood draw for about £20 if not happy to do finger prick

Ask Medichecks or Blue Horizon if they post to jersey

Jenny583 profile image
Jenny583

gamma glutamyl transferase - 11 L iu/l (12-43 )

Adjusted calcium - 2.23 mmol/l (220 - 260) (this has improved )

Transferrin Saturation - 19.9 L % (20 - 50 )

Iron 13 - umol/l - (7 - 30 )

Glumular filtration rate - 84 ml/min/1.73m^2 (>90 ) ( This is going down)

TSH 0.35 L mU/l ( 0.50 - 5.00 )

free T4 10.2 pmol/l ( 10.0 - 25.0 )

Free T3 4.5 pmol/L (4.3 - 8.1 )

B12 685 H ng/l (200 - 680 )

total 25 - OH vitD 79 nmol/L

Thanks- here are the main points. They never have or will give me a ferritin test, so I was nervous of taking more than 1 iron tab a day.

I had to buy my own of course.

I fasted on day of test.

SlowDragon profile image
SlowDragonAdministrator

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:
tukadmin@thyroiduk.org

Prof Toft - article just published now saying T3 is likely essential for many, especially note his comments about thyroidectomy and RAI patients currently being inadequately treated

rcpe.ac.uk/sites/default/fi...

silverfox7 profile image
silverfox7

Don't know whether this would help. I was speaking to someone in Guernsey re being tested and paying for treatment as I know you have to in the CI's it's some time ago now. . She was thinking of going to the south coast of England for treatmentbut I also said don't rule out France and geographically that is nearer. I know there are holiday trips when in the warmer months but wondered if that was an option you could explore.

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