Results

[Sammyh90]

Why has endo said I look like I am forgetting to take my 50mcg levothyroxine?

TSH 8.2 (0.2 – 4.2)

FREE T4 11.3 (12 – 22)

Diagnosed 2013

Thank you

[SeasideSusie Remembering]

Sammy

Because he's out of his depth, doesn't know how to treat hypothyroidism and is covering up his ignorance by blaming the patient. It's a new game endos seem to be playing lately.

There's obviously something very wrong and you need an increase in Levo. Was your dose increased?

Post full information so members can help.

Have you had dose changes? Post results, dose of meds taken when test was done, what change was made and what was the reason?

Have you had thyroid antibodies tested - do you have Hashimoto's?

Have you had vitamins and minerals tested? If so post results, say if you're supplementing, with what and the doses.

[Sammyh90 in reply to SeasideSusie]

Antibodies are TPO ANTIBODY 276 (<34) and TG ANTIBODY 355.6 (<115)

[Sammyh90 in reply to SeasideSusie]

Dose not yet increased, I thought it would have been by now

[Sammyh90 in reply to SeasideSusie]

Most recent dose change

150mcg levothyroxine (SEPT 17)

TSH 0.03 (0.2 - 4.2)

FREE T4 20.1 (12 - 22)

FREE T3 4.2 (3.1 - 6.8)

175mcg levothyroxine (JAN 17)

TSH 0.02 (0.2 - 4.2)

FREE T4 22.6 (12 - 22)

FREE T3 4.5 (3.1 - 6.8)

175mcg levothyroxine (NOV 16)

TSH 3.86 (0.2 - 4.2)

FREE T4 17.2 (12 - 22)

FREE T3 3.2 (3.1 - 6.8)

[SeasideSusie Remembering in reply to Sammyh90]

Sammyh90 Just by looking at your Nov 16 and Jan 17 results with you being on the same dose, it's your Hashi's that causing the fluctuations in results.

I presume after these in September 17

TSH 0.03 (0.2 - 4.2)

FREE T4 20.1 (12 - 22)

FREE T3 4.2 (3.1 - 6.8)

your endo saw your suppressed TSH and panicked, then reduced your dose from 150mcg. Did you go down to 50mcg in one go? If so that's dreadful, dose changes should be gradual. Anyway, there's nothing wrong with those results, FT4 and FT3 are both in range. TSH is irrelevant once we're on thyroid meds.

TSH is a pituitary hormone, the pituitary checks to see if there is enough thyroid hormone, if not it sends a message to the thyroid to produce some. That message is TSH (Thyroid Stimulating Hormone). In this case TSH will be high. If there is enough hormone - and this happens if you take any replacement hormone - then there's no need for the pituitary to send the message to the thyroid so TSH remains low.

It seems that no doctor understands this. Hence they blame the patient for overmedicating themselves.

So after your dose reduction you now have

TSH 8.2 (0.2 – 4.2)

FREE T4 11.3 (12 – 22)

and you can see you desperately need a dose increase. 25mcg now, retest and another increase of 25mcg in 6-8 weeks time, then continue with retesting/increasing every 6-8 weeks until you feel well. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo - see thyroiduk.org.uk/tuk/about_... > Treatment Options:

According to the BMA's booklet, "Understanding Thyroid Disorders", many people do not feel well unless their levels are at the bottom of the TSH range or below and at the top of the FT4 range or a little above.

The booklet is written by Dr Anthony Toft, past president of the British Thyroid Association and leading endocrinologist. It's published by the British Medical Association for patients. Avalable on Amazon and from pharmacies for £4.95 and might be worth buying to highlight the appropriate part and show your doctor.

Also -

Dr Toft 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 article by emailing [e-mail] print it and highlight question 6 to show your doctor.

I would also add that looking at your results in January and September when your TSH is below range, with your FT4 and FT3 at those levels you could do with the addition of some T3 to your Levo.

I see SlowDragon has given you lots of useful information and links about Hashi's/gut problems. All I would add is that supplementing with selenium l-selenomethionine 200mcg daily can also help reduce the antibodies, as can keeping TSH suppressed.

[Sammyh90 in reply to SeasideSusie]

Yes levo reduced in one go. I was taking T3 some time before these test results and the endo said it wouldn't make a lot of difference if he took me off the T3 just like that

[SeasideSusie Remembering in reply to Sammyh90]

Endo is a jerk. Absolutely no way should Levo be reduced from 150 to 50mcg in one go. And did the T3 make a difference? Did you feel better? Were your results better - FT3 nearer the top of the range?

He's saying it wouldn't make a lot of difference if he took me off it because the NHS is trying to de-prescribe it due to cost so they're telling everyone it doesn't work or there's no clinical need for it.

If you were better on it you should ask for it to be reinstated.

When was it removed?

[Sammyh90 in reply to SeasideSusie]

Yes T3 helped me feel better. It was removed in May 2017 and my results were at the top of their ranges

[SeasideSusie Remembering in reply to Sammyh90]

OK, then you shouldn't have had it removed. shaws has information on what you can try and do about this to try and get it reinstated (Shaws, I will try and remember to bookmark one of your replies about this and refer people to it in future )

[Msbnurse]

1. Your TSH IS VERY HIGH..

2. You probably are not converting your T4 to T3..

3. Need to see a ft3 and RT3 for diagnostic purposes along with ANTIBODY TESTING.

4. Ant hair loss or thinking?

5. Low mood/drive, confused or slow thinking?

6. How's your libido?

7. How's your gut working..is it hyper or hypo-active?

8. Are you tired and wired at bedtime.. insomnia?

9. What's your iron, ferritin and VitB 12 ?

10. Hair breaking off at crown?

11. Chk stool studies..Do culture,fat content to chk for malabsorption, culture for parasites, chk for C-diff.

12. Taking enough Magnesium supps to support your thyroid?

Any malic acid with the Magnesium?

13. Daily Vitamin D3/K2 (1000IU up to 5000IU)

Get Vitamin D levels chkd.

14 Chk your hormone levels for estrogen and testosterone..if low need to support with Bioidentical hormone replacement therapy besides your Thyroid.. also need to get Levothyroxine..it works poorly. No generics! Try Dessicated Thyroid and T3 combo..with elevating dose every 2-3 wks until u feel normal....but watch for palpitations because then too much T3.

G o o d luck!!!

[Sammyh90 in reply to Msbnurse]

Hair loss and thinning, constipation, joint aches, dry skin, heavy periods, low libido, gut hypoactive thank you

[Sammyh90 in reply to Msbnurse]

Antibodies are TPO ANTIBODY 276 (<34) and TG ANTIBODY 355.6 (<115)

[Sammyh90 in reply to Msbnurse]

I also have high testosterone as well and nothing done about it thank you

[greygoose in reply to Msbnurse]

You can tell she's not converting very well, just by comparing her FT4 and FT3. No need to pay for an expensive rT3 test. With an FT4 of over 20, her rT3 is going to be high, anyway. But, that's neither here nor there.

[SlowDragon Administrator]

Your antibodies are high this is Hashimoto's, (also known as autoimmune thyroid disease). About 90% of hypothyroidism in UK is due to Hashimoto's.

Hashimoto's very often affects the gut, leading to low stomach acid, low vitamin levels and leaky gut.

Low vitamins that affect thyroid are vitamin D, folate, ferritin and B12. When they are too low they stop Thyroid hormones working.

Have you got these test results and ranges?

According to Izabella Wentz the Thyroid Pharmacist approx 5% with Hashimoto's are coeliac, but over 80% find gluten free diet helps significantly. Either due to direct gluten intolerance (no test available) or due to leaky gut and gluten causing molecular mimicry (see Amy Myers link)

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's is very poorly understood

Changing to a strictly gluten free diet may help reduce symptoms.

thyroidpharmacist.com/artic...

thyroidpharmacist.com/artic...

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

Low stomach acid can be an issue

Lots of posts on here about how to improve with Apple cider vinegar or Betaine HCL

thyroidpharmacist.com/artic...

Other things to help heal gut lining

Bone broth

thyroidpharmacist.com/artic...

50mcgs is a starter dose, this should be increased in 25mcgs steps until TSH is around one, and FT4 towards top of range.

You need a new endo.

Email Louise at Thyroid UK for list of recommended thyroid specialists [e-mail]

[Sammyh90 in reply to SlowDragon]

Will have to post results in another thread, got too much other stuff going on with my body right now thank you