No follow up due to waiting lists : Dear all At... - Thyroid UK

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No follow up due to waiting lists

Dexterpuppy profile image
4 Replies

Dear all

At the beginning of March I saw my endo who agreed to prescribe T3 10mcg alongside Levo 50mg as I don’t seem to be converting, am chronically exhausted to the point I feel like I’m constantly drugged with Rohypnol or something and unable most days to get up in the morning, no energy at all and piling on weight by the week. As this was a new drug he wanted to see me back in 6 weeks. I have still not had an appointment through despite ringing his secretary 3 times who told me I wasn’t the only one waiting and I’ll get an appointment when they can. As he asked to see me 6 weeks later I’m concerned they are not taking this seriously enough ? I wanted to ask him also about cutting out levo if I am not converting as I am piling on weight weekly and now up to 14.7 stone. I was 9.3 stone before I was diagnosed and put on levo. Any advice would be much appreciated.

Thank you in advance

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Dexterpuppy
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SeasideSusie profile image
SeasideSusieRemembering

Dexterpuppy

Have you discussed this with our GP? I would ask GP to do full thyroid testing - TSH, FT4 and very importantly FT3 must be included now that you are taking T3. You can always ask on the forum for guidance when you have the results. Any problems with your endo going forward you just tell him you tried and tried to get an appointment, not your fault that you couldn't so you had to do the best you can so you got advice from a thyroid charity.

Dexterpuppy profile image
Dexterpuppy in reply toSeasideSusie

Thank you Susie I will make an appointment to go tomorrow. I didn’t realise I could speak to

them also thank you very much.

SlowDragon profile image
SlowDragonAdministrator

Your GP should definitely arrange blood tests - TSH, FT3 and FT4

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, and if on T3 don't take in 12 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)

As you have Hashimoto's you must get vitamin D, folate, ferritin and B12 retested too

Are you already on strictly gluten free diet? If not perhaps you should consider trying it

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

thyroidpharmacist.com/artic...

But don't be surprised that GP or endo never mention gut, gluten or low vitamins. Hashimoto's gut connection is very poorly understood

Dexterpuppy profile image
Dexterpuppy in reply toSlowDragon

Thank you Slowdragon. I am following a gluten free as much as possible however I am on the road a lot with work so sometimes I can lapse. Will ask for all the tests you recommended thank you very much .

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