Hi new to this - TSH over 6 normal FT4 - Thyroid UK

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Hi new to this - TSH over 6 normal FT4

Cheryl_W
Cheryl_W

Hi I'm struggling at work at the moment. I have hypothyroidism found in 2014 and taking 50mcg levo. My concentration is so poor and my memory is failing. Period has started off heavy but second day in and it is scantier than usual. Experiencing some hyper symptoms of flushing, sweating? My TSH is currently 6.5 mIU/L (0.2 - 4.2) and FT4 12.9 pmol/L (12.0 - 22.0)

Feedback welcome on next plan of action thanks

11 Replies
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SeasideSusie
SeasideSusieAdministrator

Cheryl

50mcg is a starter dose. Why are you on 50mcg when you were diagnosed in 2014? You are undermedicated to have those results. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it is needed for FT4 and FT3 to be in the upper part of their respective reference ranges if that is where you feel well.

Have you had thyroid antibodies tested? Give results if you have.

Have you had vitamins and minerals tested? Give results if you have and say if you are supplementing.

Have you been on different doses, if so why has it changed?

Have you ever felt well? If so on what dose and what were the results?

Hi I used to be on 200mcg and that was where I felt well but my results have been going up and down a lot and this makes me reluctant to adjust dose. Haven't had thyroid antibodies tested. I do supplement but endo is testing my minerals and vitamins in another 3/4 weeks with full thyroid panel. Vitamin D is being done by GP.

SeasideSusie
SeasideSusieAdministrator
in reply to Cheryl_W

Cheryl

If you've been on as high a dose as 200mcg and you results have been up and down, this suggests you might possibly have autoimmune thyroiditis aka Hashimoto's. Ask your endo to test Thyroid Peroxidase and Thyroglobulin antibodies. Both need testing because you can be negative for TPO but positive for TG.

Another reason for results varying, especially TSH, is because the tests were done at different times of the day. TSH is highest early morning and lowers throughout the day, it also lowers after eating. We always advise blood tests being done at the earliest appointment of the morning, fast overnight and leave off Levo for 24 hours. This way you can accurately compare results. This is a patient to patient tip which we don't discuss with doctors or phlebotomists.

If you post your latest test results and say what you are supplementing we can say if you are taking enough.

Hi all results done fasting, early morning and leaving off levo for 24 hours.

SeasideSusie
SeasideSusieAdministrator
in reply to Cheryl_W

So it looks like Hashi's could be a possibility then. If antibodies are present, they attack the thyroid and gradually destroy it. The antibody attacks cause fluctuations in results and symptoms. Important to get both types tested.

Ok thanks how recent should my vitamin and mineral results be? Vitamin D is 5 months old, B12 and folate 6 months old (hence the retest) and ferritin/complete blood count done Wednesday just gone but don't have the results of these

SeasideSusie
SeasideSusieAdministrator
in reply to Cheryl_W

Cheryl

It doesn't matter, post the results and say what you're supplementing and we can see if it's adequate. When you are retested you will be able to see if the dose you've been using has done any good.

Doctors tend to think that anywhere within range is fine, however -

Optimal results for thyroid hormone to work are

Vit D - 100-150nmol/L according to the Vit D Council

B12 - very top of range, around 900-1000

Folate - at least half way through it's range

Ferritin - minimum of 70, preferably half way through it's range

Full blood count and iron panel showing no signs of anaemia

Ok thanks

Ferritin 41 ug/L (15 - 150)

MCV 81.5 fL (83 - 98)

MCHC 387 (310 - 350)

RBC 4.41 (3.80 - 5.80)

WBC 7.13 (4.00 - 11.00)

Platelets 250 (150 - 500)

MCH 27.9 (28 - 32)

Haemoglobin 115 (115 - 150)

Haematocrit 0.41 (0.37 - 0.47)

Iron 5.8 umol/L (6.0 - 26.0)

Transferrin saturation 12 % (12 - 45)

Folate 2.2 ug/L (2.5 - 19.5)

Vitamin B12 224 pg/L (190 - 900)

Vitamin D total 28.3 nmol/L (25 - 50 deficiency)

Taking 800iu D3/1 ferrous fumarate/5mg folic acid

SeasideSusie
SeasideSusieAdministrator
in reply to Cheryl_W

Cheryl

Vitamin D total 28.3 nmol/L (25 - 50 deficiency) Taking 800iu D3

You were given a maintenance dose and you should have been given loading doses of D3. See NICE treatment summary for Vit D deficiency:

cks.nice.org.uk/vitamin-d-d...

"Treat for Vitamin D deficiency if serum 25-hydroxyvitamin D (25[OH]D) levels are less than 30 nmol/L.

For the treatment of vitamin D deficiency, the recommended treatment is based on fixed loading doses of vitamin D (up to a total of about 300,000 international units [IU] given either as weekly or daily split doses, followed by lifelong maintenace treatment of about 800 IU a day. Higher doses of up to 2000IU a day, occasionally up to 4000 IU a day, may be used for certain groups of people, for example those with malabsorption disorders. Several treatment regims are available, including 50,000 IU once a week for 6 weeks (300,000 IU in total), 20,000 IU twice a week for 7 weeks (280,000 IU in total), or 4000 IU daily for 10 weeks (280,000 IU in total)."

Each Health Authority has their own guidelines but they will be very similar.

It's unlikely that 800iu will have improved your level much, if at all. Is this being retested? If it's still below 30 then see your GP and ask that he treats you according to the guidelines and prescribes the loading doses. Once these have been completed you will need a reduced amount (more than 800iu so post your new result as the time for members to suggest a dose) to bring your level up to what's recommended by the Vit D Council - which is 100-150nmol/L - and then you'll need a maintenance dose which may be 2000iu daily, it's trial and error so it's recommended to retest once or twice a year to keep within the recommended range. You can do this with a private fingerprick blood spot test with City Assays vitamindtest.org.uk/

If your GP wont give you the loading doses, come back with your new level and we will tell you what to buy.

There are important cofactors needed when taking D3

vitamindcouncil.org/about-v...

D3 aids absorption of calcium from food and K2-MK7 directs the calcium to bones and teeth where it is needed and away from arteries and soft tissues where it can be deposited and cause problems.

D3 and K2 are fat soluble so should be taken with the fattiest meal of the day, D3 four hours away from thyroid meds.

Magnesium helps D3 to work and comes in different forms, check to see which would suit you best and as it's calming it's best taken in the evening, four hours away from thyroid meds

naturalnews.com/046401_magn...

Check out the other cofactors too.

**

Ferritin 41 ug/L (15 - 150) 1 ferrous fumarate

IF your ferritin is still less than half way through range when retested, you can help raise your level by eating liver regularly, maximum 200g per week due to it's high Vit A content, and including lots of iron rich foods in your diet apjcn.nhri.org.tw/server/in...

Haemoglobin 115 (115 - 150)

Iron 5.8 umol/L (6.0 - 26.0)

Transferrin saturation 12 % (12 - 45)

MCV 81.5 fL (83 - 98)

MCHC 387 (310 - 350)

These results suggest iron deficiency anaemia and you should have been treated according to NICE Clinical Knowledge Summary for iron deficiency anaemia treatment (which will be very similar to your local area guidelines):

cks.nice.org.uk/anaemia-iro...

How should I treat iron deficiency anaemia?

•Address underlying causes as necessary (for example treat menorrhagia or stop nonsteroidal anti-inflammatory drugs, if possible).

Treat with oral ferrous sulphate 200 mg tablets two or three times a day.

◦If ferrous sulphate is not tolerated, consider oral ferrous fumarate tablets or ferrous gluconate tablets.

◦Do not wait for investigations to be carried out before prescribing iron supplements.

•If dietary deficiency of iron is thought to be a contributory cause of iron deficiency anaemia, advise the person to maintain an adequate balanced intake of iron-rich foods (for example dark green vegetables, iron-fortified bread, meat, apricots, prunes, and raisins) and consider referral to a dietitian.

• Monitor the person to ensure that there is an adequate response to iron treatment.

If you still have over range MCHC and below/low in range everything else, then you need to discuss iron deficiency anaemia with your GP.

**

Folate 2.2 ug/L (2.5 - 19.5) 5mg folic acid

Vitamin B12 224 pg/L (190 - 900)

Did your GP check you for signs of B12 deficiency before prescribing folic acid? Check now - b12deficiency.info/signs-an... and because folic acid masks signs of B12 deficiency you may need to think back to before you started taking it.

Your B12 is far too low. I have read (but not researched so don't have links) that BCSH, UKNEQAS and NICE guidelines recommend:

"In the presence of discordance between test results and strong clinical features of deficiency, treatment should not be delayed to avoid neurological impairment."

And 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."

See what your levels are like when retested. If B12 is still low and/or you are experiencing signs of B12 deficiency you should post on the Pernicious Anaemia Society forum for further advice healthunlocked.com/pasoc

**

I am fairly sure that you have Hashi's. The fact that you have mentioned that you are experiencing some hyper symptoms of flushing, sweating makes it almost a certainty.

Gut/absorption problems go hand in hand with Hashi's and low nutrient levels are very often the result and yours certainly are. So it's very important now that both types of antibodies are tested.

If you want to find out quickly, you can get them tested with a fingerprick blood test (or venous blood draw) using one of our recommended labs. They test both types. If you want to do that then ask for details of which test to order.

Thanks vitamin D is meant to be done next month and GP did not check me for signs of B12 deficiency before starting folic acid

SeasideSusie
SeasideSusieAdministrator
in reply to Cheryl_W

Cheryl

Well you have all the information you need for now.

You could ask why you weren't given the Vit D loading doses, why your haemoglobin/iron/transferrin saturation/MCV/MCHC results, which suggested iron deficiency anaemia at the time, weren't acted on.

Check to see if did have, or have now, signs of B12 deficiency and if so you will need further testing, but as I said the PA forum is best for advice on this.

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