Help needed

[Sarahsmurfs]

Hi, my mum had her thyroid radioactively treated 15yrs ago and has been on thyroxine ever since. Over the last 2 years she has become increasingly unwell with various problems - massive weight loss, breathlessness, anxiety, constipation, stomach pain, extreme fatigue...... she has been to several doctors including a thyroid consultant and now endocrinologist! Her tsh was 3 in May, last month it was 8.6 and now its 12! They have decided to increase her medication from 100 to 100/125 alternate days. The dr said she had an under active thyroid and ideally he would be telling her to lose weight but she weighs about 6 stone and is 5’ tall!!!! What are we missing. Apparently t3 and t4 are raised too but I don’t have those figures. Can anyone shed any light??? Thanks

[greygoose]

I don't understand the doctor's comment. Presumably he already knew she had an under-active thyroid is she's been on thyroxine for 15 years. And why, ideally, would he be telling her to lose weight if she only weighs 6 stone? Did he have a white cane and a guide dog?

And why did they only increase her levo by 12.5 mcg if her TSH had gone up to 12? I'm afraid none of this is making sense. You should really find out what her FT4 and FT3 were, with the ranges, to make it more understandable.

It doesn't actually sound as if her lack of thyroid is causing all those symptoms, as they came on suddenly. What else have they been investigating?

[SlowDragon Administrator]

For full Thyroid evaluation she needs TSH, FT4, FT3 and also very important to test vitamin D, folate, ferritin and B12

Coeliac or gluten intolerance are bothnvery common. Coeliac especially can cause significant weight loss

Low vitamin levels can badly affect Thyroid hormones

Ask GP to test for coeliac disease and vitamin testing

Regardless of the coeliac result, she may benefit from strictly gluten free diet.

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

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. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Some people do loose weight when hypothyroid as gut is badly affecting preventing absorption of nutrients

Does she have any gut symptoms?

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

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

Other medication at least 2 hours away, some like HRT, iron, calcium, vitamin D or magnesium at least four hours away from Levothyroxine

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 or at repeat prescription.

Many patients do NOT get on well with Teva brand of Levothyroxine. Though it is the only one for lactose intolerant patients

[eeng]

It sounds very strange that FT3, FT4 and TSH are all high. Can you get hold of the results and post them (with the lab ranges?). Breathlessness can be caused by iron deficiency, and other deficiencies often occur in people who have been hypothyroid for a long time. I hope she gets sorted out soon and that her doctor is on the ball.

[pennyannie]

Hello Sarah,

I too have had RAI I-131 treatment for Graves Disease in 2005.

I have been extremely unwell for the past four-five years.

The only blood test flagged for me was low ferritin.

I know now I have been suffering from undermedication of hypothyroidism, and also some long term consequences of taking RAI. There is very little NHS information regarding RAI side effects and sadly I have not received any help in this matter, no acknowledgement from doctor or hospital, and have had to sort myself out.

This site has been invaluable in my learning curve, and I am now much better placed to

offer some limited knowledge.

Slow Dragon has given you good general advice above.

You're in the right place, you just need to get all your Mum's results plus their relevant ranges and come back on for a more detailed answer.

Your Mum's lucky she's got you looking out for her -

Take good care, get all the information from the doctor and repost your question.

[Sarahsmurfs]

Thanks all. I now have some more information!!

Hba1c - 42

Calcium - normal

Magnesium - normal

Protein - normal

Alk phos - normal

Cortisole - 429 Nmol/L - deficiency

FT4 - 21.3 normal

FT3 - 3.3 low

Tmol/L & TSH = 9.97 High mlu/l

Vitamin D - 29.96 Nmol/L severe deficiency

BP - 140/80

Can anyone shed any light???