Thyroid result confusion: I have been on... - Thyroid UK

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Thyroid result confusion

Postpartum profile image
15 Replies

I have been on thyroxine for just over a year after I took anti thyroid medication after I gave birth to my son in May 2018. I have posted on here for advice before and find it most helpful.

My dose of thyroxine has been changed by the GP and endocrinologist 4 times in line with my thyroid function tests. I have been tested every 6 weeks to three months since my thyroid problems started. At its highest in 2018 my t4 was 39.3 (0.7-17.0) lowest 3.3. My tsh has been 0.01 (0.4-4.50) many times and has risen to 55.21. My results in December were t4 14.1 (0.7-17.0) and tsh 0.3 (0.4-4.50) so in line with the info by Dr Toft in Pulse Magazine I convinced the GP not to decrease my thyroxine (been on 100mg since September). Last year the GP lowered my thyroxine in 25 increments down to 25 mg and I felt awful and was referred back to endocrinologist who put thyroxine back up to 100 over a period of months. I was discharged from the endo in September.

My results this month are t4 18.0 (0.7-17.0) t3 5.2 (3.9-6.9) and tsh 0.01 (0.4-4.50) I started taking anti-depressants in early January and these can make me feel exhausted. Overall I do not feel that I experiencing symptoms of being hyperthyroidism although my menstrual cycle is very long.

I am vegan and I do not eat soya or gluten. I am putting on weight even though I am exercising every day.

I have a telephone appointment with the GP on Friday and need some advice please. I am concerned they will reduce the thyroxine and I will put on even more weight and it will affect my well being as I am already depressed. Thanks in advance

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humanbean profile image
humanbean

Overall I do not feel that I experiencing symptoms of being hyperthyroidism although my menstrual cycle is very long.

A very long and/or very heavy period may be caused by low iron and low ferritin (iron stores).

Being vegan might leave you more open to problems with anaemia and low iron than people who are not vegan. You might find this website of interest :

dailyiron.net/

It covers food suitable for various dietary regimes.

Postpartum profile image
Postpartum in reply tohumanbean

Vitamin results from December 2019 folate 21.4 (3.1-19.9) ferritin 20 ug/L (11-307) B12 330ng/L (145-910)

GP said these were fine

humanbean profile image
humanbean in reply toPostpartum

Vitamin results from December 2019

folate 21.4 (3.1-19.9) This is good.

ferritin 20 ug/L (11-307) This is very inadequate. Mid-range is 159.

B12 330ng/L (145-910) This is too low - a result of 500 - 900 would be better.

GP said these were fine

Ferritin : Optimal for iron and iron-related measures is described in this link :

rt3-adrenals.org/Iron_test_...

On this forum we suggest that ferritin is probably best around mid-range, so yours is way too low. I wouldn't recommend supplementing iron when all you know is ferritin, or alternatively, if all you know is serum iron. I give the reasons for this in this thread :

healthunlocked.com/thyroidu...

To get more info on your iron levels, this is a good test :

medichecks.com/iron-tests/i...

There is a 10% discount code shown at this link :

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

Obviously it would be better if you could get your doctor to do a full iron panel, but a doctor who thinks a ferritin level of 20 is fine is unlikely to agree to do one.

Folate : I don't know if you are supplementing folate or whether your level has been achieved with food. If you are supplementing then you should reduce your dosage or reduce the number of days a week that you take it, the idea being to maintain it at roughly the level it currently is. Taking folate supplements to increase your level further is just a waste of money.

Vitamin B12 : I don't know what the most popular method of supplementing B12 is at the moment. Perhaps you could research what other people take on the forum. You would almost certainly feel better with a B12 level in the upper half of the reference range.

Postpartum profile image
Postpartum in reply tohumanbean

Thank you

Full iron done in December I was told all within range but iron TBIC is high at 75 (45-70) others in range - serum iron 18.6 (13-32) transferrin 3.0 (2.0-3.6) percentage iron saturation 25% (15-45)

SlowDragon profile image
SlowDragonAdministrator

Absolutely essential to regularly test vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking?

As vegan you will need to supplement B12, vitamin D and probably B complex...very likely iron too

ALWAYS test first

Postpartum profile image
Postpartum in reply toSlowDragon

I take vit D 1000 iu supliments, b12 1000 mcg lozenges, b complex supplements and better you iron spray of 5mg. I am breastfeeding my 20 month old so conscious of my vitamin levels. I cook from scratch every day eating a varied diet based on beans, nuts, lentils lots of fruit and veg and grains.

Vitamin results from December 2019 folate 21.4 (3.1-19.9) ferritin 20 ug/L (11-307) B12 330ng/L (145-910)

SlowDragon profile image
SlowDragonAdministrator in reply toPostpartum

No vitamin D test

£29 nhs postal kit

vitamindtest.org.uk

Folate good

Ferritin and B12 not brilliant

Heavy periods are classic sign of being hypothyroid

Ask Gp for full iron panel test for anaemia

As you have hashimoto’s have you tried strictly gluten free diet

Hashimoto's Frequently 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. Dairy is second most common.

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

While still eating high gluten diet ask GP for coeliac blood test first or buy test online for under £20, just to rule it out first

Assuming test is negative you can immediately go on strictly gluten free diet

(If test is positive you will need to remain on high gluten diet until endoscopy, maximum 6 weeks wait officially)

Trying gluten free diet for 3-6 months. If no noticeable improvement then reintroduce gluten and see if symptoms get worse

chriskresser.com/the-gluten...

amymyersmd.com/2018/04/3-re...

thyroidpharmacist.com/artic...

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

restartmed.com/hashimotos-g...

Postpartum profile image
Postpartum in reply toSlowDragon

Thank you

Vit D in December 64.7 (50.0-250.0)

Full iron done in December I was told all within range but iron TBIC is high at 75 (45-70) others in range - serum iron 18.6 (13-32) transferrin 3.0 (2.0-3.6) percentage iron saturation 25% (15-45)

I had a celiac test last year after advice on here it came back negative and gave up gluten after the results.

SlowDragon profile image
SlowDragonAdministrator in reply toPostpartum

GP will only prescribe vitamin D to bring levels to 50nmol. But improving to around 80nmol or 100nmol may be better

ncbi.nlm.nih.gov/pubmed/218...

vitamindsociety.org/pdf/Vit...

Test twice yearly via vitamindtest.org.uk

Vitamin D mouth spray by Better You is very effective as it avoids poor gut function

It’s trial and error what dose we need, with hashimoto’s we frequently need higher dose than average

Local CCG guidelines

clinox.info/clinical-suppor...

Government recommends everyone supplement October to April

Did you notice symptoms improving on gluten free diet?

greygoose profile image
greygoose

Sounds like your doctor is dosing by the TSH, which is very, very wrong. Your FT4 is high, but your FT3 is just under mid-range, meaning that you are a poor converter.

Have you had your antibodies tested? Do you have Hashi's? That would explain the jumping around of your results.

Depression is a symptom of low thyroid hormones. If your FT3 were higher, you probably wouldn't need antidepressants. When you speak to your doctor, remind him that if he reduces your levo, not only will your FT4 go down, but so will your FT3. And it is low T3 that causes symptoms like depression, not TSH! :)

Welcome to the forum.

Postpartum profile image
Postpartum in reply togreygoose

The endo said I have autoimmune hypothyroidism previous thyrotoxicosis. Antibodies TPO 198.4 when last tested

Would you say I need to reduce my thyroxine dose because of tsh being 0.01?

greygoose profile image
greygoose in reply toPostpartum

OK, so you have Hashi's. No point in retesting antibodies. They fluctuate all the time, but whatever the level, you'll still have Hashi's.

No, I would never say anyone needed to reduce their levo due to the TSH, whatever its level. Dosing by the TSH is 100% wrong. It's the FT3 the most important number. And yours is probably too low. Reducing your levo would make you feel a lot worse. The TSH is an unreliable guide to thyroid status and rarely corresponds to symptoms. Although it doesn't cause any symptoms itself. :)

Lora7again profile image
Lora7again

You do realise that your depression might be a symptom of your thyroid disease? I was offered them when I felt very depressed because I felt so ill and refused them because I knew it would impact my thyroid. I was also offered counselling twice for my thyroid disease. I could just imagine the conversation between me and the Counsellor. "How are you feeling Lora?" Me "Well my hair is dropping out and I am balding, my nails are dropping off, my eyes are blurred, my skin is dry and flaking and I lie in bed all day not bothering to wash or eat because I feel so ill!" I refused both offers and took my health into my own hands because Doctors would not treat my thyroid disease. This is what a lot of people have had to do here in the UK and in other countries because Doctors refuse to help.

Postpartum profile image
Postpartum in reply toLora7again

I highlighted that my depression could be linked to my thyroid but this was dismissed. I resisted anti depressants for three months but became very unwell so I started taking them. I am attending weekly CBT 1-to-1 sessions which are really helpful

Batty1 profile image
Batty1

From my personal experience anti-depressants can mess with thyroid results.

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