Thyroid UK
90,738 members105,091 posts

Hi I am new to this, HELP

Hi I was diagnosed as having underactive thyroid 20 yrs ago,taking 75 / 100mg levothyroxine alternate days seemed ok on that.

2 1/2 yrs ago started feeling unwell night sweats hot flushes then cold,low & fed-up.anxious,almost like being over active,was given a course of anti depressants,

early2016 dropped to 75mg levo.

Last blood test 5/11/17 TSH 10.7 Free T4 14.2

dose upped to 100mg levo. Now feel even worse aches,joint and back pain and really fed up feeling this way.

for the last 6 months I have been taking 100mg of Lustral Sertraline as perscribed,all to no avail.

aged 71 HELP.

33 Replies
oldestnewest

Hi Breena It seems from those numbers that you are under-medicated, which could be causing/exacerbating your symptoms. Whilst you wait for others to reply in greater detail it would help for you to add the reference ranges (the figures in brackets) so that members can see exactly where your levels sit, within the ranges. If you have any other results, post those too, including your thyroid levels which led to your dose being reduced - some symptoms, confusingly, can indicate being both over- or under-medicated.

1 like
Reply

Thanks, have put ranges in on new post,

Reply

With a TSH of over 10, you are very, very under-medicated, and it's not surprising that antidepressants aren't helping. Your dose needs increasing by a lot more than that. But, you have to go slowly - a 25 mcg increase every six weeks, until your symptoms are gone and your TSH is one or under. So, get a retest six weeks after starting the 100 mcg and demand an increase in dose. :)

1 like
Reply

As result of having dose reduced and being under medicated you are likely to have low vitamin levels

Ask GP to test vitamin D, folate, ferritin and B12.

Post results and ranges on here now if you have them, or on a new post if you need to get GP to do them

The current guidelines on Thyroid management are appalling (new ones in the pipeline for 2019)

Many GP's mistakenly believe a TSH anywhere in range is ok.

On Levothyroxine we need a TSH around one and FT4 towards top of range and FT3 at least half way in range

Ask for 25mcg dose increase in Levothyroxine and for vitamins to be tested

1 like
Reply

Thanks

15/11/17 results TSH 10.7 mU/L 0.35- 5

Free T4 14.2 pmoI/L 9 - 24

Reply

yes extremely under medicated

TSH should be around one

FT4 around 18-20

Definitely get vitamins tested

Blood test should be as early as possible in morning and fasting. Don't take Levo in 24 hours prior to test, delay and take straight after. this gives highest TSH and lowest FT4 as there is over reliance on test results not symptoms.

Reply

My Tsh is 1.93

Reply

Thanks info really a great help

1 like
Reply

you are clearly very hypo

But if GP is unhelpful

Email Thyroid UK for list of recommended thyroid specialists

please email Dionne:
tukadmin@thyroiduk.org

Reply

Have done this today. Blood tests tomorrow morning.Will post results when we get them.my hubby just had a thought when taking levo in the morning as I always do would a cup of decaf tea have any affect on the levo?

Also am thinking of taking some highly absorbable, fast acting liquid curcumin,(500ng ) any thoughts on if it would cause problems.

Reply

Yes no tea or coffee for an hour after taking Levo (pain I know)

The gut needs to be as acidic as possible

Milk in tea is not good

I changed to taking a bedtime for that reason

As recommended by my endo and recent research

Sorry no idea about curcumin

Reply

Thanks I had blood drawn today have decided to try taking levo at night then I can have my tea(decaf) in the morning. WILL POST BLD RESULTS when I get them.thanks for your help.

1 like
Reply

Sertraline is an antidepressant which simply makes matters worse ...wean off it slowly ....no way is 75mcg ever a full dose you have clearly been totally undermedicated for years

Vital now that a full gamut of tests are done

TSH

Freet4

Freet3

Ferritin

Folate

B12

Vit d3

Everything must be optimum not just in range

Reply

Thanks we will try to get our gp to play ball.

Reply

Your dose of levo should be increased by 25mcg every 4 weeks ,, ,theres no need to wait for every 6 weeks ...but its utterly vital that any vitamins under halfway in their ranges are addressed too

From today you must take 2000mg of vitamin C every single day in divided doses as well

1 like
Reply

have been taking Vit C as you suggested Blood tests due to morrow.

Reply

Remember do not take Levo in morning

Delay taking until after test

Reply

Hi did as you suggested have results can you help explain?

Reply

At last blood test results not in plain english but maybe someone can tell us what they are we did ask for was thyroid antibodies,Ferriitin,Folate,B12, Vit D3 B2 Iron Zinc TSH, FT4 ,FT3, rT3,totalT3, stand by for a long read. those with( NNA ) = normal no action reqd as said on report

Sethyroidperoxdase Ab conc (DDG3004) (nna) 4 iu/mL 0.00 - 50.00iu/mL

PlasmaC reactive protein (nna) <4.0 mg/L 0.00 - 10.00mgL

Serum zinc level (nna) 14.35 umol/L 11.00 - 24.00 umol/L

Serum total 25-OH vit D level 68 nmol/L 75.00 - 200.00 nmolL

Serum calcium 2.41 mmol/L note change of method for calcium from 2/10/17

calcium adjusted level 2.38 mmol/L 2.20 - 2,60 mmol/L

Serum inorganic phosphate 1.28 mmol/L 0.08 - mmol/L

Serum albumin 45 g/L 35.00 - 50.00 g/L

Total alkaline phosphatase 70 iu/L 30.00 - 130.00iu/L

Serum TSH level (nna) 0.37 mu/L 0.35 -5.00mu/L

Serum ferritin (nna) 85 ug/L

Blood film microscopy (nna)

Neutrophil count 4.6 10*9/L 2.00 - 7.5010*9/L Lymphocyte count 2.5 10*9/L 1.00 - 4.0010*9/L

monocyte " 0.4 10* 9/L 0.20 - 0.8010*9/L Eosinophil " 0.1 10*9/L 0.00 - 0.4010*9/L

Basophil " 0 10*9/L 0.00 - o.o1010*9/L

Full blood count F B C satisfactory no action

Total white cell count 7.8 10*9/L 4.00 - 11.0010*9/L

Red blood cell (RBC) 5.01 10*12/L 3.50 -5.510*12/L

Haemoglobin estimation 147 g/L 115.- 165.00g/L Haematocrit 0.48 ratio 0.37 - 0.47 ratio

Mean corpuscular vol MCV 95.6 fL 75.00 - 105.00fL

Red blood cell distribut width 12.7 11.00 - 15.00

Mean corpusc ( MCH ) 29.3 pg 26.00 - 35.00pg

Mean corpusc Hb ( MCHC ) 306 g/L 290.00 - 350.00g/L

Platelet count 237 10*9/L 150.00 - 450.0010*9/L

HYPOCHOMIA 4.7 %

Serum folate (nna) 14 ug/L 2.00 - 17.00ug/L

Plasma vitamin B12 level (nna) 465 ng/L 200.00 - 900.00ng/L

Here endeth the long lesson can anyone explain this I am still feeling the same

since 15 nov TSH has come down from 10.7 to 0.37

I having been on 100.00 mg levo

Reply

The important ones are as follows

TSH - yes is low in range which is good

FT4 - not tested

FT3 - not tested

No antibodies tested

Vitamin D - 68 (75-200)

This is too low. You need to self supplement. GP can only prescribe 800iu which is unlikely enough

Better You vitamin D mouth spray is good. Perhaps try 2000- 3000iu for 6-8 weeks.

Retesting via vitamindtest.org.uk £28

Aiming for around 100nmol

B12 465 ( 200-900)

GP would think this fine. You may not. With thyroid issues we often need B12 at high end of range

If you experience any low B12 symptoms you may need to supplement. Sublingual B12 lozenges and/or a good vitamin B complex. This helps keep folate good level 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...

Ferritin 85

No range, but normal around or above 70 is fine

Eating liver once a week will help keep levels adequate

Your zinc is on low side. You might want to supplement

thyroidpharmacist.com/artic...

The fact your TSH has gone from 10 to 0.37 with no change in dose suggests you have Hashimoto's (high thyroid antibodies)

You might consider getting full Thyroid testing privately

FT4, FT3 and TPO and TG antibodies were not tested

Private tests are available

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

Medichecks Thyroid or Blue Horizon Thyroid 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.

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, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

1 like
Reply

Thanks for info We will go for blood checks privately , we were never told to fast and not to take levo 24 hrs before tests.

all tests done before this last one were none fasting

May 2015 feeling very unwell

TSH 1.7 (0.35 - 5 )

FT4 19.8 (9 - 24 )

levo 100 / 75 alternate days

Dec 2015 feeling very nervy on the go all the time. Hospital Endo reduced Levo dose to 75

TSH 2.7 (.35 - 5)

FT4 16.7 ( 9 - 24 )

FT3 3.7 ( 3.5 - 6.5 )

Sept 2016 yearly test Still not feeling well

TSH 3.7 ( .35 - 5 )

Vit D 87 (75 - 200 ) perscribed 800

Nov 2017 feeling extremely unwell

TSH 10.7 (.35 - 5 )

FT4 14.2 ( 9 - 24 ) Levo uped to 100

Sorry to be a pain but full details may give give a better picture

At present I am suffering with so many aches and pains,pushing myself to do all the normal things,I feel like throwing all the pills in a bin.I am still cutting back on the sertraline I am down to 50mg for the last 3 wks and will go to one every other day.

Reply

Well you are now very under medicated. A TSH that high no wonder you were feeling terrible

Most patients need a TSH around or just UNDER one and FT4 towards top of range

You have never had FT3 tested

Or had antibodies tested

Ask GP if they can please test Thyroid antibodies

If antibodies are high this is to diagnose Hashimoto's also called autoimmune thyroid disease. Important to know.

You should get bloods retested after 6 weeks on new dose.

Ask GP to test TSH, FT4 AND FT3

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, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results

These are patient to patient tips (plus endocrinologists who are thyroid specialists also recommend this too)

Always take Levo on empty stomach and then nothing apart from water for at least an hour after. Many take on waking, but it may be more convenient and possibly more effective taken at bedtime

verywell.com/should-i-take-...

Many people find Levothyroxine brands are not interchangeable. Once you find a brand that suits you, best to make sure to only get that one at each prescription. Watch out for brand change when dose is increased

Selenium supplements can help improve conversion of FT4 to FT3. Look for one with vitamin E in as well

Vitamin C is good for healing with anxiety

Reply

Please see post of 4 days ago tsh was under 1 you did comment on the last test report the g p was asked for antibodies etc bear in mind all previous tests ere non fasting 0ur last results were fasting and the tsh had come down from 10.7 to .35.sorry if I gave you the wrong info.

Reply

Are you in UK ?

You need FT4 and FT3 plus antibodies tested.

NHS should test these, but increasingly common to refuse on grounds of cost

Private testing available

See Thyroid UK the home website

Reply

Sorry to butt in SlowDragon, but reading down this thread I think Breena's results from four days ago do seem to include antibodies (albeit with a typo which is easily done!): Thyroid Peroxidase Ab 4 iu/ml (0-50 iu/ml). I'm still a novice at this so apologies if I've got that wrong though... But still no T4 or T3. Good luck Breena as you look for the best way forward - you'll get good advice here from people who know far more than me!

2 likes
Reply

we are in UK.

Reply

Thanks I am not sure what the antibodies are as not mentioned and not sure what levels they should be.

Reply

Yes I missed this at start of your list of results

Sethyroidperoxdase Ab conc (DDG3004) (nna)

4 iu/mL 0.00 - 50.00iu/mL

This is TPO (thyroid peroxdase) antibodies. Result was negative - as it was 4 which is below 50

You can still have high TG antibodies, these have not been tested.

NHS won't test TG antibodies if TPO are negative

So as you still need FT4 and FT3 tested I would recommend you pay the small extra to test both TPO and TG antibodies

medichecks.com/thyroid-func...

Often have money off offers on Thursdays. If you register they will email any offers

Reply

Thanks that is good to know we are learning lots will wait till thursday .

1 like
Reply

Hi recent blood test results

TSH 0.11 mIU/L ( 0.27 - 4.20 )

Free Thyroxine 21.6 pmoI/L (12.00 - 22.00 )

Total Thyroxine (T4) 120.0 nmoI/L (59 - 154.00 )

Free T3 4.59 pmoI/L (3.1 - 6.8 )

Thyroglobulin antibody <10 IU/mL (0.00 -115 )

Thyroid Peroxidase Antibodies <9.0 IU/mL ( 0.00 - 34.00 )

Still feeling Aches and pains stiff joints .Must keep on the go all the time despite not sleeping well broken sleep every 2/3 hrs

Reply

Despite taking enough Levo to get FT4 high in range and low TSH, your FT3 is not very high

You might need small dose of T3

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

Professor Toft recent article saying, T3 may be necessary for many

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

If your only taking 800iu of vitamin D it is likely not enough

Did you start taking a vitamin B complex and/or B12 sublingual lozenges to improve low B12

Any other supplements like zinc, selenium, magnesium

Reply

I am taking a double dose (2000) of vit D3 and( 2000) VitC for about 3weeks.Still suffering with aches and painful joints

Reply

It can take weeks or months for pain to fade if you have been vitamin D deficient a long time

1 like
Reply

You may also like...