Advice please: Hi... need some advice please....I... - Thyroid UK

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Advice please

les121 profile image
14 Replies

Hi... need some advice please....I've been on thyroxine about 6 years now... recently gone from 125.to 150 daily....I suffer really bad on my legs especially with water retention. ...and weight issues .. gained 3 stone that wont go away even after healthier eating....yesterday I asked my doctor about natural thyroid hormone. ...she said it's not regulated and never heard of it.....also my water retention probably nothing to do with my thyroid condition!!!!...... suffering in silence for a long time now due to no one to turn to in the health sector. ...on anti depression tablets due to my unhappiness due to weight. ...HELP... xx

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les121
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Clutter profile image
Clutter

Les, I'm pretty sure water retention can be a problem with undiagnosed and under treated hypothyroidism. If you post your recent thyroid blood results with the lab ref ranges (the figures in brackets after your results) members will advise whether you are optimally medicated.

NDT brands like Armour, Acella, NatureThroid and Westhroid are regulated and listed in the USP-NF and Erfa is regulated in Canada but they aren't licensed for use in the UK . Doctors can prescribe them on a named patient basis but are often discouraged from doing so by their local CCG. Most members using NDT buy their own online and self medicate.

shaws profile image
shawsAdministrator

Welcome,

I am sorry you are suffering. Your plea is not uncommon with people on too low a dose and levothyroxine only. We have to read and learn as much as possible ourselves in order to try to recover our health.

I will give some links for your information and I think you will be amazed that our doctors do not know more. Your GP is not hypothyroid obviously. They haven't been trained in clinical symptoms either.

web.archive.org/web/2010032...

web.archive.org/web/2010073...

web.archive.org/web/2010103...

If you have had a recent blood test for your thyroid gland, please get a print-out from the surgery, with the ranges, and post on a new question.

If you haven't had one recently, make a new appointment. Do NOT take levothyroxine before it, take it after and have the appointment as early as possible. Ask for a Full Thyroid Function Test (probably wont do them all but ask anyway).

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

also ask for Vitamin B12, Vit D, iron, ferritin and folate we are usually deficient.

in reply toshaws

Blimey someone that knows what they are talking about LOL.

Hey les121 what do you classify healthy eating as?

Tweetypie28 profile image
Tweetypie28

Hi

I suffered terrible water retention when I was on T4 alone and under medicated. My ankles would swell and literally gang over my shoes. I would go to work wearing a size 6 shoe and have to change into a size 7 towards the end of the day. My calves would swell too and I could feel them getting tighter and tighter. My stomach too would swell as though I was 6 months pregnant. my doctor agreed it could be a symptom of hypothyroidism or a circulation problem. He gave me water tablets which did help but I didn't like taking these tablets daily as I felt they were just "sticking a plaster" over the real issue.

My endo at this point prescribed T3 and once this got into my system the water retention went. I still had other symptoms and at one point, my endo suggested trying omitting the T3 and raiding T4 but when I did this, the swelling returned within a few days. For me, T3 was definitely needed to stop my water retention. Hope this helps. I really feel for you with the weight gain, I've gained 2 stone with this crappy condition and have got to the point that I never look at myself naked in the mirror as it makes me cry buckets for an hour afterwards :-(

Tweetypie28 profile image
Tweetypie28 in reply toTweetypie28

That should say *raising T4, not raiding, stupid predictive text x

Tweetypie28 profile image
Tweetypie28 in reply toTweetypie28

PPS - my dr also said Armour isn't regulated blah blah blah, I see an endo who prescribes it and it really does make a difference. No weight loss yet though, here's hoping....

Cleo2467 profile image
Cleo2467 in reply toTweetypie28

Sorry what is Armour?

Clutter profile image
Clutter in reply toCleo2467

Cleo, Armour is one of several brands of natural dessicated thyroid (NDT) which is made from pig thyroid and contains both T4 and T3.

Cleo2467 profile image
Cleo2467 in reply toClutter

Thanks for clearing that up for me

Linda_57 profile image
Linda_57

I completely agree with getting yourself on NDT. I recently heard a talk by a thyroid savvy doctor (can't remember his name) who believes that T2 regulates weight, and you will only get that with NDT.

There is a really good website stopthethyroidmadness.com/ - sorry, don't know how to post that as a link - which is based on the book of the same name by Janie Bowthorpe, and which guides you through the whole minefield.

Linda_57 profile image
Linda_57 in reply toLinda_57

Oh - it does it itself!

les121 profile image
les121

Many thanks for replies....where's the best place to buy NDT from? X

Linda_57 profile image
Linda_57

You can get info on the different types here stopthethyroidmadness.com/a.... Some require a prescription and some don't. I personally take Thyroid-S which doesn't, and it's cheap. If you want I can PM you with details.

les121 profile image
les121 in reply toLinda_57

That would be great thanks x

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