Latest Results Advice Needed: Graves Disease... - Thyroid UK

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Latest Results Advice Needed

Eladee profile image
15 Replies

Graves Disease -Subtotal Thyroidectomy 1989

Radioactive Iodine 1994

I currently take Levothyroxine 75mcg Monday to Saturday then 100mcg Sunday

I was diagnosed with osteopenia after having 2x vertebral compression fractures and started adcal D3 plus HRTDec 2021

I haven’t seen GP as this was a private test and they probably won’t change anything as all results are in range but I feel aching, tired, lethargic got terrible brain fog along with my back pain I feel pretty rubbish!

I don’t take any other supplements at the moment

Any help will be greatly appreciated.

TSH 2.10 mIU/L (0.27 - 4.20) 46.6%

Free T4 (fT4) 17.1 pmol/L(12 - 22) 51.0%

Free T3 (fT3) 3.94 pmol/L(3.1 - 6.8) 22.7%

T4:T3 Ratio 4.340 

Vitamin B12 (active) 291 nmol/L (145 - 569) 34.4%

Vitamin D 106 nmol/L (25 - 209) 44.0%

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Eladee profile image
Eladee
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SeasideSusie profile image
SeasideSusieRemembering

Eladee

TSH 2.10 mIU/L (0.27 - 4.20) 46.6%

Free T4 (fT4) 17.1 pmol/L(12 - 22) 51.0%

Free T3 (fT3) 3.94 pmol/L(3.1 - 6.8) 22.7%

Did you do the test as we advise:

* No later than 9am

* Water only before the test

* Last dose of Levo 24 hours before test

* Presumably no biotin in any supplement (eg B Complex) for 3-7 days before test

If so then your results show undermedication and you could do with an increase in your dose of Levo.

The aim of a treated hypo patient on Levo only, generally, is for TSH to be 1 or below with FT4 and FT3 in the upper part of their referece ranges, if that is where you feel well. You fall well below these aims and you are symptomatic so ask GP if he will increase your Levo, try for 25mcg daily but be willing to compromise on 12.5mcg for now if necessary. Use the following information to support your request:

From GP online

gponline.com/endocrinology-...

Under the section

Cardiovascular changes in hypothyroidism

Replacement therapy with levothyroxine should be initiated in all patients to achieve a TSH level of 0.5-2.0pmol/L.

Also, Dr Toft, past president of the British Thyroid Association and leading endocrinologist, states in Pulse Magazine (the professional publication for doctors):

"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).*"

*He confirmed, during a talk he gave to The Thyroid Trust in November 2018 that this applies to Free T3 as well as Total T3 and this is when on Levo only. You can hear this at 1 hour 19 mins to 1 hour 21 minutes in this video of that talk youtu.be/HYhYAVyKzhw

You can obtain a copy of the article which contains this quote from ThyroidUK

Email : tukadmin@thyroiduk.org

and ask for the Dr Toft article from Pulse magazine. Print it and highlight Question 6 to show your GP.

Vitamin D 106 nmol/L

This is a decent result for someone not supplementing.

The Vit D Council, the Vit D Society and Grassroots Health all recommend a level of 100-150nmol/L (40-60ng/ml), with a recent blog post on Grassroots Health mentioning a study which recommends over 125nmol/L (50ng/ml).

Vitamin B12 (active) 291 nmol/L (145 - 569) 34.4%

This is actually a Total B12 test not Active B12. The range for Active B12 is much narrow, eg 37.5-188 or very similar.

291nmol/L = 394pg/ml and this result is quite low.

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."

It would be a good idea to raise this level which can be achieved by supplementing with sublingual methylcobalamin B12, along with a good quality B Complex to balance all the B vitamins. One bottle of B12 should be enough then just continue with the B Complex.

When taking B Complex this should be left off for 3-7 days before any blood tests as it contains biotin which can give false results.

Were Folate and Ferritin tested?

Eladee profile image
Eladee in reply to SeasideSusie

Thanks for your detailed reply Seaside Susie, yes I did the test as recommended but fingers didn’t want to bleed so the folate and ferritin couldn’t be tested because the sample had haemolysed, not sure if this would affect the thyroid function tests.

I could try and see if GP will increase the dosage, they probably won’t based on the private results so I’ll have to get blood test. I’ll print off what you’ve recommended to take with me and get started on the B12 and B complex.

Thanks again 😊

SeasideSusie profile image
SeasideSusieRemembering in reply to Eladee

If you want suggestions for B12 and B Complex these are what I would suggest you look at

B12:

cytoplan.co.uk/vitamin-b12-...?

or

amazon.co.uk/Bioactive-METH...?

B Complex:

amazon.co.uk/Yipmai-Liposom...?

or this one which is the same just branded differently:

hempoutlet.co.uk/vitablosso...

or Thorne Basic B if you can get it at a decent price, it's almost identical to the above.

Eladee profile image
Eladee in reply to SeasideSusie

Hi Seaside Susie I managed to get phone appointment with my GP but she has refused to increase my thyroxine as my TSH is ‘perfect’ said she can’t justify it due to the risk of atrial fibrillation and they don’t consider the T3 and T4 !

She’s going to send me for more blood tests to rule out anything that might be causing my symptoms, they’ll probably all be normal aswell!

SeasideSusie profile image
SeasideSusieRemembering in reply to Eladee

What other bood tests?

Eladee profile image
Eladee in reply to SeasideSusie

full blood count, u&e’s liver, renal, bone, lipid hba1c, iron studies plus TSH not thyroid panel! She told me to increase my oestrogel from 2 pumps daily to 3.

She said we’ll have a discussion about the results either by phone or face to face so I’ve got face to face appt next Thursday.

SeasideSusie profile image
SeasideSusieRemembering in reply to Eladee

See what they come back like, especially iron studies. We need optimal nutrient levels for thyroid hormone to work properly so looking at ferritin level is important. Work on improving B12.

Just testing TSH alone is wrong and a low TSH doesn't cause AF but unfortunately doctors are ignorant about this. You have information about where TSH should be and links, so it's a case of get ready to do battle.

Eladee profile image
Eladee in reply to SeasideSusie

Thanks, it’s a crazy situation!

Eladee profile image
Eladee in reply to SeasideSusie

Hi Seaside Susie I’ve just checked my adcal D3 and it contains 400 IU cholecalciferol equivalent to 10 mcg of D3. I take 2 of these daily so I am having some Vit D as a supplement.

SlowDragon profile image
SlowDragonAdministrator

push GP to increase dose levothyroxine to 100mcg daily

retest thyroid levels in 6-8 weeks

Which brand of levothyroxine are you currently taking

Eladee profile image
Eladee in reply to SlowDragon

Thanks SlowDragon

I’m going to try for the increase.

I’ve got different brands of Levothyroxine.

25mcg Wockhardt UK ltd

50mcg Mercury Pharma

100mcg Accord

pennyannie profile image
pennyannie

Hello again Eladee

Looking back at your history I see I wrote to you around 4 years ago when I first started self medicating with Natural Desiccated Thyroid.

It is absolutely pointless being dosed and monitored on just a TSH reading especially as you have Graves and had a thyroidectomy.

The thyroid is a major gland and responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual well being, your inner central heating system and your metabolism.

When on T4 monotherapy It is essential that you are dosed and monitored on your Free T3 and Free T4 readings with the objective to have both these essential, vital hormones balanced within the ranges at around a 1/4 ratio T3/ T4.

We generally feel at our best when our T4 is up in the top quadrant of the range with the T3 tracking behind at a slightly lower % through the range.

The conversion ratio does not apply until such time as your T4 is up in the top quadrant as the body will protect T3 over T4 when levels to T4 are too low.

The body runs on the active hormone T3 - said to be around 4 times more powerful than T4 - and not T4 which is a pro-hormone and a storage hormone and in order to be able to convert T4 into T3 we need optimal ferritin, folate, B12 and vitamin D and inflammation. antibodies, any physiological stress ( emotional or physical ) depression dieting and ageing will also impact and downregulate T4 into T3 conversion.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100mcg.

Some people can get by on T4 only :

Some people find T4 seems to stop working as well as it once did and find their health restored adding a little T3 to their T4 prescription - making a T3/4 combo :

Some people can't tolerate T4 at all and need to take T3 - Liothyronine only :

Whilst others find their health restored better taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid, dried and ground down into tablets referred to as grains.

Up until around 20 years ago all these treatment options were available through your doctor and readily prescribed on the NHS.

We are all started off on T4 as it is the cheapest treatment option but your doctor had the power to prescribe either T3 or NDT if Levothyroxine didn't fully restore the patients health.

Currently for either T3 or NDT to be prescribed on the NHS you will need to be assessed as a suitable patient by a NHS endocrinologist and I'm afraid it has become a bit of a post code lottery as CCG/ ICB financial constraints rather than medical need are at play throughout the country.

Eladee profile image
Eladee in reply to pennyannie

Hi Penny Annie

Thanks for your reply, I’ve got no chance of getting T3 or NDT or even an increase as my GP has refused to increase my thyroxine as my TSH is ‘perfect’ said she can’t justify it and they don’t consider the T3 and T4 😡She’s going to send me for more blood tests to rule out anything that might be causing my symptoms 😣😣

pennyannie profile image
pennyannie in reply to Eladee

Well - I'd think about changing your doctor or start reading up and doing it for yourself as I and many others forum members have had to do.

I know it's not ideal and I couldn't afford to go privately but this might be the only way you get to feel better - Thyroid Uk the charity who support this forum do hold list of patient to patient recommended, sympathetic NHS and private thyroid specialists who may well help you.

Just email admin@thyroiduk.org and it can be sent out to you:

You can also ask for recommendations of whom to see - but replies will by Private Messages as we are not allowed to openly discuss on this part of the forum - and replies will come through under your chat button ( paper plane icon ) .

Eladee profile image
Eladee in reply to pennyannie

Thanks PennyAnnie

I’ll get the bloods done she’s requested and see if they show anything (they probably won’t ) then go from there 😊

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