Help Needed With Underactive thyroid: I was... - Thyroid UK

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Help Needed With Underactive thyroid

CHAPMAN_LYNNE profile image
6 Replies

I was diagnosed with overactive thyroid back in 2004, was treated with radioactive Iodine which seems to have killed my thyroid and have never felt well since. Weight gain, dry hair and skin, muscle weakness, muscle spasms and extreme fatigue, I am on 125mg levo. I also self medicate with 2000ui Vit D supplement combined with 24mcg Vit K2

and 350mg magnesium.

Doc said folate, ferritin and B12 tests was not offered for testing. I asked if I could try T3 but was refused. Doctor says results are ok no further action required.

Blood tests 06/12/2017

Thyroid function test

Serum free triiodothyronine level 3.70 pmol/L [3.1 - 6.8]

Serum free T4 level 18.6 pmol/L [11.0 - 23.0]

Serum TSH level 0.79 mU/L [0.27 - 4.5]

Note revised TSH & FT4 reference ranges as from 11.7.16

Serum thyroid peroxidase antibody concentration 117 IU/mL [< 34.0]

Outside reference range

Result of vit d test below.

Serum total 25-hydroxy vitamin D level 63 nmol/L

(>75 nmol/L)

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6 Replies
Nanaedake profile image
Nanaedake

How were you diagnosed as having an overactive thyroid? What antibodies tests were done to diagnose overactive thyroid? Clearly you have elevated TPO antibodies for autoimmune thyroid disease but what other antibodies were tested for before radio iodine treatment?

Can you get B12, folate and ferritin tested privately? Very likely low as they often are with autoimmune thyroid disease. When you get results then post them here for good advice.

Someone else can give advice on T3 as I have no experience of taking it. If vitamin levels are low though, it might affect conversion from T4 to T3. Your vitamin D is still low according to the lab reference range you give above. It may increase if you can get out into the sun over the summer months but it looks like you need to increase your supplement over the winter months.

CHAPMAN_LYNNE profile image
CHAPMAN_LYNNE in reply toNanaedake

To be honest when I was initally diagnosed I was in a pretty bad way, lost a lot of weight, very hot (even in winter) extreme fatigue but couldn't sleep, whole body shaking if I attempted any physical effort, resting heart rate 186bpm. Bllod tests where done but I was never told anything other than...you have hyperthyroidism, stabilized with carbimazole and then treated with Radioactive Iodine which knocked my thyroid for six and given levo, increased gradually to 125mcg. I feel so unwell most of the time but Doc doesn't seem to care and I can't afford to pay for private testing at this time, will have to save up. Many thanks for your advice, at least when I see Doc again I can go armed with some knowledge.

whispers profile image
whispers

I would ask again about the folate, ferratin and b12 test. Can you see someone else in the practice?

If not watch out for Thursday's as they have offers on private testing through this page

SlowDragon profile image
SlowDragonAdministrator

Your results suggest you are under medicated or a poor converter.

FT4 could be slightly higher, FT3 is far too low

High TPO antibodies still, so strictly gluten free diet likely to help

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...

Vitamin D needs to be around 100nmol. Better You vitamin D mouth spray is good as avoids poor gut function

Suggest you get try strictly gluten free diet for minimum of 3 months and increase dose of vitamin D and get full private testing of thyroid and vitamins as GP is unhelpful

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

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

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven 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 ideally be done as early as possible in morning and fasting.

If on Levothyroxine, don't take in the 24 hours prior to test, delay and take straight after

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

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 at

tukadmin@thyroiduk.org

Request list of recommended thyroid specialists, some are T3 friendly

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

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

cazlooks profile image
cazlooks

NDT would give her the T3 without more T4 wouldn't it?

Kell-E profile image
Kell-E in reply tocazlooks

NDT is 38mcg T4 and 9mcg T3 per grain.

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