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[countrybumpkin]

Thyroxine gives you the hormones needed to keep you alive but it does not give you all the hormones that a normal functioning thyroid would give. This is why some people swear by natural thyroid extract from pigs as they then get all the hormones BUT there are dangers to this extract in that it needs very closely monitering as every dose is different plus the risk of cross species infections.  Before synthetic thyroxine was available this natural extract was all that was available but it was not ideal.

One thing we were taught was that because you are not getting every single missing hormone supplemented ( some of the missing hormones are in miniscules amounts almost untraceable) then you are not being "cured" of your hypothyroidism totally so most people have some remaining symptoms like weight problems or great difficulty in losing weight due to their metabolism being affected/ eyebrow loss at edges/very dry skin/voice problems etc. 

We were shown pictures back in victorian times of people in lunatic asylums who were suffering from hypothyroidism and they were heartbreaking. Huge hairless women full of fluid with vacant eyes as untreated eventually this is how it manifests itself.

[Sunnydays]

What's the difference between underactive thyroid and autoimmune underactive thyroid?
My sister was diagnosed with underactive at age 55 and thyroxine has not made any difference to how she feels (although of course without it she might be even worse) my mum was diagnosed at a similar age also so I guess it's in the pipeline for me.

[scriv]

I did feel very ill when my (severe) hypothyroidism was first diagnosed 23 years ago now and levothyroxine did indeed make a new woman out of me, but it does not take effect immediately.

I started on a low dose and worked up, finally settling on 100mcg a day and it did take quite a while before I felt 'normal'. It may have even be about 12 months. Since then however I have been quite stable with a few fluctuations over the years.

I also had an early menopause at around the same time as I was diagnosed and have been on some form of HRT ever since. I have never been aware of interaction between HRT and Levothyroxine, but I have always used patches and local applications rather than oral HRT.

I have a super GP and a 12 month check up with blood tests for Thyroid Function including TSH and T4, but my doctor is always ready to do another test if needed during the year and always listens to how I feel as well as looking at what the test results say.

So I am one who is very grateful for my Levothyroxine  - and to my wonderful GP:)

[countrybumpkin]

Agreed. I was just trying to give people a heads up that underactive thyroid conditions (especially if autoimmune) can often run alongside other autoimmune conditions so the picture can get very mixed up and cause disappointment when the little thyroxine pills don't make everything right.

When I was first diagnosed it was a time when a whole bunch of books were being written about underactive thyroid and the wonders of getting your TSH to a very low level after which you would feel wonderful.

A lot of nonsense if you ask me!

I have to say that I don't feel any different either and still have the loss of eyebrows/what feels like no metabolism and very dry skin. Without those little pills though in time we would all be very ill indeed!
I agree that some Drs tend to say take this tablet and all your symptoms will go but enlightened Dr's realise that that little pill cannot cure all your symptoms but they do protect your heart etc although most people with underactive thryoid even treated have slightly high cholesterol.  IF you have a cholesterol test and its very high the first thing they do is test your thyroid as an undiagnosed underactive one will give you high cholesterol amongst many other things.

Most underactive thryoids are caused by your body attacking the gland in one way or another.  I have forgotten the fine details of this but to be honest it does not mattter as the treatment is exactly the same.  Everyone diagnosed with underactive gland is more at risk of having other auto immune diseases.
My poor cousin is type 1 diabetic/ underactive thryoid and also coeliac disease.

[Briony]

The more I read, the less I understand (story of my life!).

Joking aside, I will definitely remind them that I have a dysfunctional pituitary gland (I think this was what my GP called it?) in case that makes a difference. I have also read that taking the BCP can lower TSH. Is that right or have I misunderstood? The reason I ask is that I have only recently stopped the pill and moved to high dose patches which suppress ovulation around Christmas time.

I've always felt that my symptoms weren't the 'normal' ones for low estrogen - I get random chills (can suddenly get goose bumps on a hot day) but never flushes, weird pain in my ankles and arms, followed by tingling fingers and fluid retention and sudden fatigue that has no relation to how much sleep I have had. Have had so many tests, yet only low estrogen found.

What were  the symptoms that led you to have your thyroid tested?  Did your hypothyroid present before or after you hit the menopause?

Thanks again for all your ideas and advice, B x
 

[countrybumpkin]

Usually the symptoms of underactive thyroid come on very slowly and are often mistaken for lots of other conditions. If you are lucky its picked up in routine blood work when it is at the beginning of becoming underactive which means that the tablets seem to not have much effect but if it had been left to develop the symptoms would have become much much more severe.  In somone with long standing hypo and alot of severe symptoms then they start them on low dose and work up over many months, these people seem to get the most noticeable benefit.

[scriv]

Yes, like in my case Countrybumpkin I had let my symptoms develop, so when I finally went to the doctor they were quite severe and had been longstanding, which was why they started me on a low dose and worked up. As you say, the condition creeps up on you slowly and you don't recognise it yourself easily as a problem- one of the points when severely hypothyroid is that everything in the body slows down, including the brain. Because it creeps on you slowly too, even your nearest and dearest often miss seeing what is happening to you.

I was cold, putting on weight, had oedema that I could actually see and manipulate in my arm, a vacant expression, difficulty doing simple arithmetic which I was normally very good with and also had problems making appointments on the phone. I couldn't think straight or get proper sentences out and was oh so slow and so very tired..... I was falling asleep all over the place too and felt as if I were walking through sludge. I found it hard getting out of bed in the morning too and had to rest after walking the children to school. The crunch came when I woke up one night and felt so ill, felt that something was seriously wrong with me but I knew not where.... and took myself off to the surgery, dozing off on the bus on the way (I didn't feel safe driving). I didn't have any eyebrow or hair loss/receding problems though, other than my hair going quite wiry and its own way.

I remember my app with the doctor when she told me the TSH result with a trainee GP in the room and it was very very high - seemed to impress the trainee lol. But, as I have already said, I have been able to manage the condition very well with the support of my GP.

One benefit though was free prescriptions, so there was a silver lining after all 

PS Re menopause - the hypothyroidism presented at around the same time or very shortly afterwards. My last period was in the May when I was 39 and by 9 months later when I was 40, I was then having what I now know were symptoms of hypothyroidism (after having had a brief spell of hyperthyroidism) and was  diagnosed just before I was 41 and had moved areas and had a new doctor. Ironically, the reason I had avoided doctors was because they were wanting to put me on HRT because of the early menopause and I didn't want to go on it - so I stayed away!

[babyjane]

I was treated for constipation (severe), very dry skin, fatigue and menstrual problems for 2 years before I asked my GP to test my thyroid because my symptoms were a carbon copy of my mother's case which went undiagnosed until she was hospitalised.  The doc did the test to 'rule it out'.  He telephoned me at 7.30 one evening to tell me that my TSH, which should be under 5, was in fact at 52. 

I had to start a low dose of thyroxine and increase very slowly and it took 18 months to get stabilised.

[scriv]

Yes, babyjane, you remind me - other symptoms I had were constipation and very dry skin too. And depression...

[Lizab]

My only symptom was what seemed to be the return of breast milk about a year after my son weaned. It wasn't even bothersome, and I only mentioned it in passing to my gynecologist when having an annual check. He ordered a TSH and prolactin test. TSH was barely out of range. That was the beginning. I've since had a heap of other tests, and tried twice to taper off the thyroid under a doctor's supervision. My latest attempt sent my TSH very high and my T levels undetectable, but no troublesome symptoms. I'm a healthy weight, neither too thick nor too thin, and going on or off meds never affected my weight. I think similar to the menopause, we can make generalizations, but the thyroid affects each person differently.

[countrybumpkin]

Scriv - hormonal upheaval is the prime time for thyroid dysfunction to appear., puberty/pregnancy and menopause.  Men rarely get this party due to the tendency for it to be inherited down the female line and also because men do not have the hormonal upheaval women do in their lifetime.  You were a textbook example of hypothyroidism, well done!
Lisab - it is so hard to know what is normal range for results in thyroid tests for anyone as one person is normal at one end and another is normal at other end of range.  This is a bit of a contentious issue between patients and Drs as alot of Drs go purely on lab results and not on symptoms.
Being nosy here but why are you trying to come off thyroxine if you need it?

[Lizab]

Countrybumpkin, it's a long story. I sent you a pm.

[BrightLight]

Hi Briony - I am reading with interest and like you I have wondered on and off for years whether my thyroid is underperforming or whether I have CFS.  I get results that are just below the threshold and told all is well.  Hurdity explained really well what my sister has explained to me - about the need to test the T3 (my nephew has a thyroid condition so she is educated)  However, this isn't easy to get, so I didn't follow it up..........hmmm

I get a bit confused about it all, even if I read clear information   I have had the tingling in feet, the cold, weight gain, hair loss, puffy face, really dry skin and hives.  Still the GP says thyroid is OK.  I think these symptoms can cross over into all the things you mention, the CFS, menopause etc Wishing you luck in getting to the bottom of things and to feel better x

[scriv]

Yes, countrybumpkin. It is all very interesting, isn't it.  I have become very well informed on my condition over the years. Mine actually made a brief appearance after the birth of my first child, had we but known it at the time, and it turned out that my late mother was also hypothyroid, so I really am conforming to text book lol. I just hope I don't pass it on to my own daughters as may well happen.

However, I have been very successful managing my condition over the years on Levothyroxine alone and also without ever having to be referred to a specialist, so am very lucky that I have had a relatively straightforward manifestation to deal with rather than having to worry about T3 etc.

And had 20 years of exemption from prescription charges

[countrybumpkin]

Yes, countrybumpkin. It is all very interesting, isn't it.  I have become very well informed on my condition over the years. Mine actually made a brief appearance after the birth of my first child, had we but known it at the time, and it turned out that my late mother was also hypothyroid, so I really am conforming to text book lol. I just hope I don't pass it on to my own daughters as may well happen.

However, I have been very successful managing my condition over the years on Levothyroxine alone and also without ever having to be referred to a specialist, so am very lucky that I have had a relatively straightforward manifestation to deal with rather than having to worry about T3 etc.

And had 20 years of exemption from prescription charges

Every single female in my family on my mothers side has had a thyroid condition both under and over active so we have some very dodgy genes! 

I get my T3 tested every 5 years or so but it does take some doing and you have to have a sympathetic GP as well.

I was 27 when my thyroid went haywire so have had free presc for 27 years.