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Original poster

hypothyroidism - tell me about your experience

27 replies

changeforthebetter · 16/08/2011 18:34

Anyone had any disputes about this and getting a diagnosis?

Recently found out 4 immediate family members have this condition and my grandma had it too. I fit a lot of the symptoms - extreme fatigue, weight gain, poor memory was always great before, heavier periods than used to be - but I have heard that it can be an issue getting a diagnosis. I am not one for reading every other website on medical conditions or trying to get things diagnosed which I do not have but there does seem to be some controversy about this so I am not sure I want to take a receptionist's breezy "it's normal" as the last word. I think I might go back to my GP and ask for a bit more detail.

OP posts:
Original poster
changeforthebetter · 18/08/2011 10:59

Anyone??

OP posts:
captaincogsworth · 18/08/2011 21:52

I have been diagnosed with this today!
I've been back and forth many, many times to my GP on and off over the years always being borderline or just under and each time being told by the receptionist that my results are normal! You need to go and see your GP to determine what 'normal' is. It will build up a pattern for you if necessary. I wish I had done years ago. I'm hoping it will help my fertility as we have been trying for 11 years and now getting a bit past it. Go back, see him/her and get your bloods tested every three months.

Hope that helps. :)

LargeGlassofRed · 18/08/2011 21:59

Going back to my Gp next week after having a previous normal test, am convinced I have it, have almost all the symtoms and was diagnosed with sarcoidosis a couple of months ago, and it's common in women with sarcoidosis.
Hate to go to the Gp but I know I'm not right.

captaincogsworth · 20/08/2011 20:11

I do hope you get sorted.

LargeGlassofRed · 20/08/2011 20:38

Thanks captin, hope the treatment starts to work soon and you feel better.

Bearskinwoolies · 21/08/2011 16:36

I was diagnosed last september with hypothyroidism - looking back it's plain that I'd gone for a long while without knowing. The only symptom I didn't have was weight gain, but only because I have a very active job.

I went to my GP with (what I thought was) diabetes, shaking, needing sugar or sugary foods/drinks, and other things, and was gobsmacked when it turned out to be my thyroid. Apparently the need for sugar was my body asking for energy, as my tsh was so high, but my t4 was almost non existent.

It's worth finding out what your GP classes as a normal t4 range, as you may be on the low side of normal.

Original poster
changeforthebetter · 21/08/2011 17:02

Thanks everyone Smile

OP posts:
Sofabitch · 21/08/2011 17:05

Hi I have this. The range for "normal" is pretty vast. So you could be feeling shit at either end of the spectrum. Personally I find I have to be border line hyper to feel ok. But that's just my experiences. It may be worth boosting iodine rich foods to stimulate your thyroid gland ? I've heard that can help.

sonearsofar · 21/08/2011 19:01

hi, I was diagnosed with this only last week! I had also gone to the surgery thinking I had diabetes, because I kept on waking up in the night and my hands had gone to sleep, and it was painful walking first thing. I'm also very overweight and finding it impossible to shift. Anyway, I went for a blood test and the doctor said I had a very low level of this and I'm on medication. If it doesn't work I've been told to double the dose.
I'll be watching this with great interest.

Thehusbandsatcricketagain · 21/08/2011 20:00

Hi,I was diagnosed 18months ago,all females in my family have it.It took a long time to get a diagnosis but have found out since it is very much as to how you feel not just the bloods results.Keep persisting as my bloods went from showing normal to abnormal in a relatively short period of time,now my levels are stable I still have problems with weight (something alien to me before) but I can stay awake,need to wrap up less,hair has stopped falling out so much & skin not as paper thin,memory can still be bit iffy but they may be due to age & menopause.......keep nagging at them,only plus side to it is free prescriptions for everything for life on all meds :o

sonearsofar · 21/08/2011 21:08

can I ask how old posters are? I thought my symptons were related to the menopause, especially the weight gain and inability to lose it

LargeGlassofRed · 21/08/2011 21:30

I'm 38 this week.

Sofabitch · 21/08/2011 21:32

I was 25 when I was diagnosed. I can't shift weight easily even when my levels are good. But that could be down to me being lazy and unmotivated. But the thing that gives my levels away best are body temp. As soon as they drop even a little within the normal range I get so cold. It can also affect fertility. Milk supply and breastfeeding.

sincitylover · 21/08/2011 22:26

I have this and had great difficulty being diagnosed - what I find so bizarre is that medical professionals can't see the difference between what is normal (within a big range) and what is optimal.

So what might be normal for one person might for another not optimal therefore they will be feeling unwell.

Surely the reasoning behind the tests is flawed. This also happens for ferritin levels - mine are quite low and my hair falls out alot but gp said no iron - however Im taking it myself.

sincitylover · 21/08/2011 22:29

also when trying to get medication for thyroid was very hard but now i have type 2 diabetes as well - thankfully still low levels medication seems to be forced down my throat.

Methinks the drug companies hard sell may have something to do with this.

Bearskinwoolies · 21/08/2011 22:30

I was diagnosed at 39, after putting it off for ages. It's interesting to hear you say about your hands sonearsofar, I get this regularly, did your gp say it was a side effect?

sincitylover · 21/08/2011 22:33

but medication (meant to say)

backtothedrawingboard · 21/08/2011 22:41

I was diagnosed in 2001 three months after my second baby. I was very poorly but symptoms were clouded by general tiredness following recovery from the Caesarian and no sleep! Weirdest symptoms were the tingling in my face that I got and the fact that I found it hard to hold a pen and sign my name in the supermarket. I was 31 when diagnosed and now take 100mcg of thyroxine daily which keeps me borderline hyper. I know my levels do fluctuate though and I take longer to recover when I've been busy or stressed or had late nights (although that could just be me getting older!!)

sonearsofar · 22/08/2011 09:16

Bearskinwoollies - when I went to the doctor thinking I had diabetes he said, because the tingling was on the outside (not upperside, if you know what I mean) of my hands it was likely to be carpal tunnel syndrome. After the blood test he said there was no indication of diabetes but a very low indication of low thyroid activity, which can affect the amount of blood going to the extremities.
I'm on 25 mcg of levothyroxine so will be interested to see what happens. At the moment I'm taking large amounts of codeine and paracetamol, due to tooth pain, but, when that is sorted out, will be interested to see what difference it has made.

Sofabitch · 23/08/2011 07:45

I'm on 250 mcg a day

Iron stops your body absorbing the thyroxine. So you should avoid taking iron tablets at the same time. So If you have to take iron tablets take them 12 hours after
Your thyroxine. Also you should avoid soya. And fortified cereals for 4 hours after taking thyroxine.

Original poster
changeforthebetter · 23/08/2011 18:17

My hair is falling out too Shock I'm mid 40s

OP posts:
Thehusbandsatcricketagain · 23/08/2011 18:53

changeforthebetter go to holland & barret & get silica tablets,make sure they contain horsetail herb,worked wonders on me when I had mass hairloss,am mid 40s too :)

Bearskinwoolies · 24/08/2011 04:49

Sonearsofar I've done some googling Blush and apparently it is a known side effect of hypothyroidism; it's called Parasthesia.

sonearsofar · 24/08/2011 07:32

I'm off to google it myself Bearskinwoolies!

LargeGlassofRed · 24/08/2011 18:20

I went back to the gp, asked her what my previous FSH test had been and she said 215 and the one I had in 2002 was 0.5.
I asked about the relation between sarcoidosis and thyroid problems but she did'nt know, but agreed i have all the symtoms of hypothyroidism,

So getting full tests done for thyroid.

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