Other tests: I wonder if you can help. I have no... - Thyroid UK

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Other tests

annnsandell profile image
22 Replies

I wonder if you can help. I have no thyroid, cancerous removal and presumably being suppressed. I am not totally happy on 125 levotyroxine because of problems controlling weight which I manage most of the time but eat very little and most of the right GI foods etc., loads of exercise, hair loss (male pattern balding) facial growth and for at least the last four years (2 tests) pre-diabetic, heart and blood pressure just controlled by pills. Personally I thought the problems are either T4/T3 conversion or high Testosterone (perhaps PCSO in earlier years unproven) Seeing all the advice on here I vowed to carefully scrutinise my next thyroid test due in January, with a 24 hour gap in medication. In the meantime, I have been to one of our better doctors and managed to get some additional tests done although, she vows that my Thyroid medication is good because of past results (that will be scrutinized by me better next time). I have also made small changes like when I take Levothyroxine, other medication and supplements. Diabetic advice not much good standard exercise and diet. Tried all the hair preparations. heart doctor says heart problems are due to Levothyroxine.

Serium folate 3.2 ug/L >2.5ug/L

Serum vit B12 361 ng/L 197.00-771.00ng/L

Free androgen index 5.2 <5.60

Serum sex hormone binding glob 50nmol?L 27.00-126.00nmol?l

Serum testosterone 2.6 nmol/L <1.4nmol?L

Serum prolactin level 156mlU/L102.00-496.00mlU/L

Serum ferritin 96nmol/L 25.00-150.00nmol/L

Serum total 25-OH vid D 56 nmol/L

eGFRcreat (CKD-EP1)1.73m*2 84mL/min/1.73m2 90-120.00mL?min/1.73m2

(JCM2333) Satisfactory normal(possible CKD stage 2 etc.)

Serium Sodium 144nmol?L 133-146.00 mmol/L

Serum Potassium 4.2 mmol/L 3.50-5.30mmol/L

Serum urea level 5.2 mmol/L 2.5-7.8 mmoll/L

Serum creatinine 66 49.00-90umol/L

What does that Testosterone range mean?

Sodium high which no doubt will affect blood pressure (I don't eat salt) perhaps try to drink more.

Kidney bit worrying.

How am I doing? When I picked up these results the Doctor hadn't seen them 17 days after testing.

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SlowDragon profile image
SlowDragonAdministrator

The relevant ones are

Folate & B12 work together

Folate is very low and B12 low (anything under 500 is pretty low, especially for anyone on Levothyroxine)

Supplementing a good quality daily vitamin B complex, one with folate in not folic acid may be beneficial

B vitamins best taken in the morning after breakfast

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...

Vitamin D - 56nmol

This is too low, but not low enough for GP to prescribe

Aiming to improve vitamin D to at least 80nmol and around 100nmol may be better .

Vitamin D mouth spray by Better You is good as avoids poor gut function. Suggest you supplement 2000iu for 2-3 months and retest.

It's trial and error what dose each person needs.

Once you Improve level, very likely you will need on going maintenance dose to keep it there.

Retesting twice yearly via vitamindtest.org.uk

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

gov.uk/government/news/phe-...

Also read up on importance of magnesium and vitamin K2 Mk7 supplements when taking vitamin D

betterbones.com/bone-nutrit...

articles.mercola.com/sites/...

healthy-holistic-living.com...

articles.mercola.com/sites/...

betterbones.com/bone-nutrit...

Do NOT supplement any vitamin K if you take any blood thinning medication including aspirin.

drsinatra.com/vitamin-k2-su...

Vitamin C and bones

healthimpactnews.com/2018/d...

Ferritin is pretty good

Hair loss can be low zinc. You could get this tested

Or see if just improving vitamin D, folate and B12 helps first

Come back with new post once you get thyroid results and ranges

Essential to test FT3 as well as FT4 and TSH

Remember to do test as early as possible in morning and fasting and no Levo in the 24 hours before test

If you normally take Levo at bedtime.....if taking test Monday morning. Delay Saturday evening dose until Sunday morning. Delay Sunday evening dose until immediately after the blood test.

annnsandell profile image
annnsandell in reply to SlowDragon

Thank you SlowDragon

What would we do without you, I just don't seem to be able to get my head round all of this although, knowledge is increasing.

I am taking D3 but left it off for a couple of days before the test to see where the levels were, so that should improve. Note there is Magnesium in that but no idea if it is enough or the right type.

Last results, although I haven't seen the full list were TSH 0.02 and T3 4.8, I know the TSH is supposed to be suppressed but isn't that too low?

Do you know anything about the Testosterone result? Understand it is all linked somehow. And under-medication causes kidney problems.

Will be interesting to see what the GP finally says, phoned again but no prognosis, I suspect receptionists are doing the usual results and this is beyond them, now told to phone Monday.

SlowDragon profile image
SlowDragonAdministrator in reply to annnsandell

GP usually has a fit and freaks out at suppressed TSH. But yes after thyroidectomy for cancer it should be suppressed

What's the range on FT3 ? (Figures in brackets after the result)

Was FT4 tested?

most important is FT3 (and to lesser extent FT4) ...TSH is often irrelevant when on Levothyroxine (unless it's too high)

Vitamin D mouth spray by Better You is good as avoids poor gut function.

Think you may be right about PCOS and high testosterone

Though it may just be due to high carb/sugar diet

Diet and thyroid are closely linked

Low sugar diet can help with PCOS and pre-diabetes

indi.ie/fact-sheets/fact-sh...

pcosdietsupport.com/the-bes...

pcosnutrition.com/sugar/

Because my partner is pre-diabetic we have been doing low carb diet (no bread, potatoes, rice, etc) plus I am strictly gluten free

Michael Moseley low sugar diet book has some excellent ideas and recipes. Who knew cauliflower rice was so delicious!

amazon.co.uk/8-Week-Blood-S...

It might be worth you trying gluten free too. Helps many thyroid patients, but only do one change at a time.

Probably low sugar/carb diet first.

Then once used to that, in say 3 months try strictly gluten free diet too

annnsandell profile image
annnsandell in reply to SlowDragon

I don't have the last results done at the hospital apart so I will have to wait until the next lot.

Yes, generally low carb and virtually no sugar, tried no carbs at all but completely mucked my stomach up. Also tried slimming world, put on weight, can lose weight on 800 calories but that is not sustainable, feel so ill on that. I can generally manage weight, that is no gain, there is no reason for diabetic from food intake and exercise so there is obviously something else going on. My daughter manages her PSCO starving herself most of the time plus gym and running, I'm too old for that but do loads of walking. Makes me cross when the government and doctors make incorrect assumptions about people's life-style. Thanks for your help, I'll be back.

SlowDragon profile image
SlowDragonAdministrator in reply to annnsandell

FT3 needs to be in top 1/3 of range.

many of us need small dose of T3 Especially too after thyroidectomy.

Professor Toft recent article saying, T3 may be necessary for many. Note his comments on current inadequate treatment following thyroidectomy

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

It is possible to get T3 on NHS. Possible but difficult

New NHS England Liothyronine guidelines November

sps.nhs.uk/wp-content/uploa...

Dossier presented to Lord O'Shaughnessy November 26th

drive.google.com/file/d/1c2...

Worth looking at DNA tests too

bluehorizonmedicals.co.uk/t...

DIO2 gene test article

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

Many of us have DNA issues too

SlowDragon profile image
SlowDragonAdministrator in reply to annnsandell

You are legally entitled to printed copies of your blood test results. Email or ring Hospital, endo secretary in new year

annnsandell profile image
annnsandell in reply to SlowDragon

Thank you

pennyannie profile image
pennyannie

Hello Annnsandell

Welcome to this amazing website.

I'm still on my learning curve but just to add to what has been already written -

A normal functioning thyroid gland produces approximately 100 T4 + 10 T3 daily.

It therefore seems logical to me that it is essential that after thyroid removal or ablation patients be prescribed both hormones and monitored accordingly.

The TSH alone is not an appropriate monitoring tool - T3 and T4 need to be measured and adjusted to patient's needs to alleviate symptoms and regain one's quality of life.

You may need to undertake your own private blood tests, and may have to finance your

own thyroid medication, but in the first instance, see what your primary care doctor can offer you.

It's essential that you read up all things thyroid as it seems this area of medical care and knowledge is sadly lacking within the Nhs and you may end up being your own doctor.

Take good care,

Penny

annnsandell profile image
annnsandell in reply to pennyannie

Thanks Penny, that's interesting, what measurement? I am supposed to be suppressed to stop regrowth because of Thyroid cancer as well which I had always understood to mean I should be given additional medication but I am not so sure now, sometimes the more I read the more I get confused. I know this is all relevant to TSH levels. Next test is due in January, I get tested 6 monthly and I am going to make sure I have the test not having taken medication for 24 hours which I believe will make the difference. In the meantime I thought I would try to check optimisation and testosterone. I generally feel ok but not as good as I used to and the other problems need controlling. Thank you for your interest.

pennyannie profile image
pennyannie in reply to annnsandell

Hey there,

Yes, after thyroid cancer a suppressed TSH is required.

But this is only one blood test measurement - it is essential that you also get a blood test for your T3 and your T4 - and all three should be looked at together.

On monotherapy with Levothyroxine, the T3 and T4 readings need to be balanced and in the upper quadrants of their relevant ranges for you to feel well.

I had my thyroid ablated with radioactive iodine.

I was monitored on a TSH read and have been very unwell -

On monotherapy I need my TSH suppressed at 0.01 to be ok - but my doctor disagrees with this -

To feel even better, I've started to self medicate with NDT which contains T3 + T4.

It's early days, but I've got my brain back, just waiting for my body to catch up !!!

NDT is pigs thyroid and was the treatment of choice before Levothyroxine etc. came

into the market place and before medicine became big business.

Your thyroid gave you more than just T3 and T4 there will have been trace elements of

T1, T2, calcitonin and possibly other vitamins and minerals as yet to be identified.

Hope that answers your question, I do tend to go on a bit !!!

annnsandell profile image
annnsandell in reply to pennyannie

Thanks pennyannie

Yes, I believe they usually look at all three but I just don't know what they are. Surgeon has set levels to aim for, on file somewhere and is particularly concerned about TSH, last I saw was .02.

I have learnt that there is insufficient knowledge of what else a thyroid does, mind you they can't even get this bit probably managed from everything I hear.

What difference has T3 made to you? I haven't had brain fog at all.

pennyannie profile image
pennyannie in reply to annnsandell

Well, as I have said, in my experience my cognitive functions were severely compromised. I had no stability from day to day - I've had many symptoms and can't say for sure whether they were due to Graves Disease, which is what I was diagnosed with, the consequences of radioactive iodine and or the wrong levels of thyroid hormone replacement due to being monitored by only a THS blood test.

All I know is that I'm now getting stronger.

This site has been my main education along with books -

Your thyroid and how to keep it healthy - Dr Barry Durrant Peatfield - is an easy read and so relevant - vitamins and minerals need o be optimal for Levothyroxine to work - please obtain all your blood test results - please do not accept OK or in range comments - without working thyroid everything needs to be optimal to keep you well.

"heart doctor says heart problems are due to Levothyroxine"

That surely has to be wrong!!! Unless of course you have severe hyperthyroid symptoms? You get palpitations and possible heart damage when you are hypothyroid as well!

That's right isn't it, SlowDragon ?

SlowDragon profile image
SlowDragonAdministrator in reply to

Heart problems can be due to LOW FT3

As we all know.....on just Levothyroxine, even with suppressed TSH, its common for FT3 to still be too low

Many need the addition of small dose of T3

hypothyroidmom.com/is-your-...

annnsandell profile image
annnsandell in reply to SlowDragon

Yes.

in reply to SlowDragon

Thanks for confirmation, I'm still pretty new to all this x

SlowDragon profile image
SlowDragonAdministrator in reply to

And low FT3 can be cause of osteoporosis

tiredthyroid.com/blog/2012/...

in reply to SlowDragon

Which makes a lot of sense. If nothing works properly without T3 that includes bone repair and growth. So how on earth did anyone get the opposite idea!!!

SlowDragon profile image
SlowDragonAdministrator in reply to

Too high a level is bad too

It needs to be not too high and not too low

annnsandell profile image
annnsandell

Hi jnetti,

Fast heart beat, palpitations, irregular heart beat, angina, pounding, heart attack are all listed as side effects of Levothyroxine. Now whether or not they are associating that to a side effect rather than the conditions, I am not aware. I don't have a thyroid so all management is manufactured.

in reply to annnsandell

"Fast heart beat, palpitations, irregular heart beat, angina, pounding, heart attack are all listed as side effects of Levothyroxine"

That's a bit like saying that a side effect of food is obesity!!!

annnsandell profile image
annnsandell in reply to

Yes, you're right there and I guess it is. I imagine if you increase from a lower level you increase heart activity. Don't they suggest periodic increases in dose to reduce this type of problem? I know when they first changed me onto Levothyroxine after treatment I got angina and they stuck me on a heart monitor, that calmed down.

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