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Underactive thyroid?

(17 Posts)
amyellen Tue 14-May-13 12:37:30

Anyone on here got one?

MrsRogerSterling Tue 14-May-13 13:49:45

Me. I am hypothyroid and currently taking 200mcg of levothyroxin daily.

SingingSilver Tue 14-May-13 16:09:05

I'm on 100mcg, and have been for over 10 years. My GPs are basically clueless aside from prescribing what they see as a 'perfect' synthetic substitute, when in reality I never lost my symptoms and they became progressively worse over the years.

I'm doing a lot better since I started reading up on underactive thyroid online. Thyroid UK is a great site. There are some good American sites too, they are USA-centric obviously but still offer some good advice. And Ray Peats site is worth a read too.

I'm currently saving to see a private doctor in Birmingham who specialises in treating thyroid disorders, and will run the full battery of blood tests and prescribe natural thyroid and supplemental T3 if necessary (many people, especially women are not able to convert T4 into T3 adequately.)

catslave Tue 14-May-13 16:24:30

Me! I am on Erfa (T4 + T3 porcine thyroid) as levothyroxine was useless - had a T4 of 22 and was still stacking on weight and had crumbling hair and nails - not to mention feeling rubbish and with a two second memory. I get my Erfa prescribed privately by my GP with my consultant's agreement, but I pay for it myself (about £400 a year- eek!) as it seems easier to get them to say yes that way. Levothyroxine costs about half that, I believe.

SingingSilver - I felt better in two weeks and lost 12lbs in 3 months after the switch.

pocketandsweet Tue 14-May-13 16:29:01

I've just been told I'm borderline. I'm also very anaemic though so supposed to take iron and then retest in 3 months, I'm totally fed up though with feeling lousy.... Two more months til my retest. I'm now guessing they are being slow about this maybe partially because of the£ of the meds. For those that have gone before..... Am I at the start of a loooong road before I will feel "normal"?

mercibucket Tue 14-May-13 16:34:02

the meds are synthetic and cost peanuts, the blood tests are a few quid

thyroid uk is great for advice

i am on 100 and fine but i also take regular vit d 30000 iu weekly and iron supplements. if i stop those i feel crap. also test b12 and folates

OneLittleLady Tue 14-May-13 16:35:35

I've also been told in the past that i'm 'borderline'. the doctors won't treat me and just retest me every so often. It's rubbish because I feel like crap all the time and just want to sleep sad

pocketandsweet Tue 14-May-13 16:37:56

At least we smell good onelittlelady smile. That was a reference to a shared passion for perfume as talked about on another thread

SingingSilver Tue 14-May-13 16:38:58

catslave that's good to hear!

I have been keeping notes while trawling the u/a thyroid forums and have added things to my diet to help for now - effervescent vit c tablets to help my thyroxine absorb, coconut oil, daily carrots and brazil nuts to make up for vitamins and minerals thyroxine leach from the system, and I'm avoiding goitrogenic food (so annoyed that I used to eat brocolli with dinner every night and thought I was doing myself some good!) and fluoride. I boil bottled water for coffee, and I use the Bio-Repair toothpaste which is fluoride free.

I'm feeling brighter and more alert but I'm so annoyed that many GPs consider the prescribing of thyroxine the last word on the issue of underactive disorders, when so many people continue to suffer.

pocketandsweet Tue 14-May-13 16:39:09

I shall head over to thyroid UK when I get the kids to bed ( as long as I don't fall asleep in process of getting them to sleep which has been known to happen).

pocketandsweet Tue 14-May-13 16:40:48

I need to avoid fluoride? I have a lot of reading to do. I also eat masses of broccoli sad

OneLittleLady Tue 14-May-13 16:44:16

very true pocketandsweet I'm off to the doctors tomorrow as it happens to get tested again so we shall see what the results say this time

SingingSilver Tue 14-May-13 16:47:54

pocketandsweet I think raw goitrogenic foods are the worst offenders. I did read somewhere that once cooked it's okay, I just don't want to risk it until I'm 100% again!

Fluoride is supposedly a thyroid suppressant, I don't think much would go into the system from toothpaste, but I like Bio-Repair anyway.

I only started reading up on this two months ago, and I'm still at the stage of frenzied note taking, and finding out what makes me feel better by trial and error. Maybe there is a thyroid support thread on health where we can all compare notes?

pocketandsweet Tue 14-May-13 16:59:46

I hadn't posted here before because I thought there is probably somewhere else I'm supposed to post this BUT this is the little part of Mumsnet that I seem I visit most. I have been reading and writing things down BUT not organised and so bloody tired that sleep often overrides research. I also have such stupid complicated medical history that sometimes I just despair of finding any answers. If I stay awake tonight I will try to find if there is a group on Health. If you find it first will you pm me the details though?

FrugalFashionista Tue 14-May-13 17:51:33

Have had hypothyreosis and the associated brain fog and loss of focus plus some ups (sleeplessness, palpitations) since my 1st pregnancy, doing really well on 75ug levothyroxine. Visited an endocrinologist, GPs don't always know enough, keeping TSH tightly controlled is the key for me. Ime the 'to treat' level (TSH>5) is too high, somewhere near TSH=1 is optimal for me; less than that, jitters and palpitations; more, gradual slowdown. My advice would be to get that seen to first, the stabilization takes a long time (about a year of doldrums for me).

SingingSilver Tue 14-May-13 17:51:58

I had a quick look, and there appear to be lots of threads on specific thyroid issue, nothing general though. Maybe the mods will move this to health when they notice it.

The Thyroid UK community pages are fantastic though, very knowledgeable.

The main thing I do unfailingly now is swallow my thyroxine with a full glass of (non tap) water with an effervescent vit c tablet in it, vitamin c is supposed to help with absorption. Then I wait at least an hour before eating. Apparently the best thing to do is take your meds on an empty stomach before bed, but I don't have the self-discipline. My GP said it would give me troubled sleep, but the few times I tried it I felt fine. Something to consider?

Plus if you take more than one tablet there is a theory that you will feel better by splitting the dose, so maybe one tablet before bed, one on getting up.

SingingSilver Wed 15-May-13 17:19:38

Oh and soya is a major food to avoid if you have an underactive thyroid, forgot to mention that.

Does anyone know of aneating plan for u/a thyroid sufferers?

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