Any suggestions as to why I still feel not right - Thyroid UK

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Any suggestions as to why I still feel not right

Hj78
Hj78

Hi all, currently taking 100mg of wockhardt levothyroxine but still feel “not right” tired, dryness around eyes, headaches,sinuses & constipation. Here are my medichecks blood results. Tsh 8.35. Free thyroxine 15.700 free t3 4.42 thyroglobulin antibody 404.000 thyroid peroxidase antibodies 69.9.

Active b12 73.000

Folate serum 7.92

Vitamin d. 74.7

Crp high sensitivity 0.48

Ferritin 24..4

7 Replies
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SlowDragon
SlowDragonAdministrator

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Assuming you did the test this way

You need to see GP for 25mcg dose increase in Levothyroxine

The aim of Levothyroxine is to increase dose until TSH is under 1.5 and FT4 in top third of range and FT3 at least half way in range

Can you add the ranges on the vitamin results

Ferritin looks low

Vitamin D is better around 100nmol

B12 and folate are on low side

As you have Hashimoto's are you on strictly gluten free diet?

If not, ask GP for coeliac blood test before considering trying it

Hj78
Hj78
in reply to SlowDragon

Hi SlowDragon sorry for the late response here are my levels and ranges. Thanks in advance for the helpful information.

ENDOCRINOLOGYThyroid FunctionTHYROID STIMULATING HORMONE *8.35 mIU/L 0.27 - 4.20 FREE THYROXINE 15.700 pmol/L 12.00 - 22.00 FREE T3 4.42 pmol/L 3.10 - 6.80 THYROGLOBULIN ANTIBODY *404.000 IU/mL 0.00 - 115.00 THYROID PEROXIDASE ANTIBODIES*69.9 IU/mL 0.00 - 34.00 HAEMATOLOGYVitaminsACTIVE B12 73.000 pmol/L 37.50 - 188.00 FOLATE (SERUM) 7.92 ug/L 3.89 - 26.80 25 OH VITAMIN D 74.7 nmol/L 50.00 - 200.00 BIOCHEMISTRYInflammation MarkerCRP - HIGH SENSITIVITY 0.48 mg/l 0.00 - 5.00 Iron StatusFERRITIN 24.4 ug/L 13.00 - 150.00

SlowDragon
SlowDragonAdministrator
in reply to Hj78

Yes, you put these on original post

You are extremely under medicated. Have you seen GP and had a 25mcg dose increase in Levothyroxine?

Bloods will need retesting 6-8 weeks after dose increase

You may need futher increase(s)

NICE guidelines saying how to initiate and increase. Note that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine

cks.nice.org.uk/hypothyroid...

TSH should be between 0.4-1.5 when adequately treated

Ask for coeliac blood test too.

Hashimoto's affects the gut and leads to low stomach acid and then low vitamin levels

Low vitamin levels affect Thyroid hormone working

Poor gut function can lead leaky gut (literally holes in gut wall) this can cause food intolerances. Most common by far is gluten.

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

Changing to a strictly gluten free diet may help reduce symptoms, help gut heal and slowly lower TPO antibodies

Ideally ask GP for coeliac blood test first

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

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

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

drknews.com/changing-your-d...

vitamin D is slightly too low, but not low enough for GP to prescribe . Aiming to improve 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 1000iu alternate days 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

Government recommends everyone supplement October to April

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

All thyroid blood tests should ideally be done as early as possible in morning and fasting. Do not take Levothyroxine dose in the 24 hours prior to test, delay and take immediately after blood draw. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

New NHS England Liothyronine guidelines November 2018 clearly state on pages 8 & 12 that TSH should be between 0.4-1.5 when on just Levothyroxine to be adequately treated

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

The simple answer to that is: because you're still hypo. Your TSH is much too high for someone on thyroid hormone replacement. And, of course, you have Hashi's. So, not surprising you still have symptoms.

Have you tried going gluten-free? That sometimes helps Hashi's sufferers.

Are you taking any supplements for low nutrients?

How do you take your levo? On an empty stomach leaving at least one hour before eating or drinking anything other than water? Do you take any other medication or supplements at the same time?

No wonder you aren't feeling well, not the finished article yet but it does take time. This forum is administered by Thyroid Uk so if you look on their site you will see what else may help you.

Up to 200mcg thyroxine is needed by some people. You are obviously still undermedicated. When did you increase to 100?

The simple answer is that your thyroid replacement is still far too low. You are still so ill that in many places you could get a new diagnosis of hypothyroid even though you are being treated.

Best practice is to get a new blood test and have your dose adjusted every 6 weeks. Unfortunately on the NHS we often wait a bit longer, but it's very important that you keep getting appointments to go back and get your dose changed. You need an increase ASAP, and you'll then need quite a few more increases to get your numbers looking perfect.

As others have said, the aim is to get your TSH down close to 1 or below, and while you're on Levothyroxine you need your freeT4 high in the range, perhaps even over the top of the range, depending on symptoms. Symptoms are the most important thing to guide dosage, although your doctor may prefer to look at just the blood tests.

Hopefully as you get a few increases your symptoms should slowly improve, and you'll get a bit more energetic and sprightly!

Good luck, as sometimes we have a fight on our hands with doctors to get the treatment we need.

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