My life with No Thyroid, Doctors an Endocrinologist and Paloma Faith

[GuardianAngel]

I thought it was time I sat down and wrote again on my life with no Thyroid.

It's a cold and wet or snowy day in Hampshire so I am upstairs out the way. I am feeling very tired today, and I had a better nights sleep but it is very up and down on that front.

I had my Thyroid removed completely nearly 7 years ago now, in what ended up being a very eventful year. As I left hospital the doctors words were along the lines of you will be fine now just take these pills each day.

And as we all know the answer to that one is only in our dreams, along with some well fit guy or gal to share your life with depending on your requirements. Well all was ok for about 18 months then it started to go wrong and like most of you here its the usual symptoms that loomed overhead like a massive dark cloud, which then showered down on me.

So now on my own with a then 14 yr old in tow I began to look for answers. Off to the doctors to see what they had to say about it all. Then sent for blood tests, to check on the good old TSH level. Well that did result in a change of levothyroxine - it was raised. Feeling better I continued with life, work, home and a teenager.

It all started to unravel further about 2 to 3 years ago. Well the brain went into melt down. My memory which had always been good just got up and left. My hair was getting thinner and I found a bald patch. This was all getting a bit scary so off to Doctors who listened requested blood tests and gave me cream to sort out the hair loss.

On the follow up things became clearer. In a word as a woman - menopause. I am younger than normal to go through it. Mind you if you are over 30 to a teenager you are middle aged and should not do a lot of things! It appears, following my own research via the good old internet, that this should not necessary have surprised me. Messing with the Thyroid is like messing with your car. If the car is not fine tuned it won't work very well if at all. If we are not medicated correctly we don't work well either. Along with being told I was depressed - ok that's not me I really don't do depressed but I did know I was not myself. More pills to fix yet another hormone that was out of balance. As my thyroid pills are a fixed amount and my body wanted different to what it was being given more help was required. Not having a normal work thyroid means you are totally at the mercy of the little white pills which I guess in effect keep you alive.

Well the hair finally grew back still not a thick but its ok. The delights of the menopause symptoms are mainly night sweats now and these are fading. I have returned to being cold in the day again from hot a lot of the time. My feet are back to their frozen self all year round. Well how many people do you know who wear furry slippers when its the height of summer! The memory has improved as well. Ok I did put the sugar in the wrong place yesterday and then wondered why I could not find it.

Other changes thanks to ideas from others here have been to change my pills to night time from day. That was a great one. I could finally sleep more than a few hours a night and be awake in the morning instead of trying to look awake.

At the moment the sleep is a bit hit and miss other life event have got in the way so I have good nights with 6 whole hours - oh what a joy. To some nights with 2 hours again.

I asked to see an Endocrinologist via the doctors and got one! I was delighted. I have to say that I have been able to get Doctors to listen to me and I have a good Endocrinologist who I have seen twice since October 2012 and will see again in April as they are checking on various levels of things that are not what they should be. They also changed my amount of Levothyroxine when needed and accept that I know when my TSH is under 1 I feel better than when it is not.

And Paloma you may ask, well I was given the album "Fall to Grace by Paloma Faith" as a present and I love it. It helps keep me going until I can find that man of my dreams.

[Hidden]

Hey GA

listened to Paloma - its Fall TO grace! Music is my language too x

can I relate with just half a thyroid and man trouble?

Ask for T3 - or NDT - T4 is incomplete, dare to get sassy. (((hugs))) Jane

[GuardianAngel]

Thanks ladies. I always say Fall from Grace not Fall to Grace. I just cant get that bit stuck in the brain - memory again lol. And as for men will I could write a book or blog all about them alone

[jmd1157]

Hi GA,

It was good to read of someone else's experience as I too have no thyroid after having thyroid cancer 20 years ago. I really wish my Endo was as good as yours. He's knocked me down from 300mcg to 150mcg and I feel rough, but he won't listen to me about how I feel only the blood tests as my T4 is coming in high even though everything else is within normal range. He also insists I'm still on too much for my body weight (72k). I really dread going, but my Dr doesn't feel he can do anything as the endo is the specialist. I only take and have been offered Levothyroxine. Many years ago I use to have a lovely ENT specialist who told me I should always stay between 200mcg and 300mcg and listen to my body.

Could I ask what you are taking now?

[shaws Administrator in reply to jmd1157]

Dr Lowe said that many are undermedicated nowadays and pre the TSH the amount prescribed was 200mcg to 400mcg.

[GuardianAngel in reply to jmd1157]

Hi JMD1157

I take 150mg on a Monday, Wednesday and Friday night and 125mg the rest of the time. At the moment my TSH is 0.62 (range 0.35 -5) and Free T4 is 19.4 (range 9-24). I like my TSH as close to 0.35 as possible.

But they are watching the following as these levels are not in range:

Erythrocyte Sedimentation Rate 35 - high

MCH 25.6 - low

Mean Platelet Volume 6.9 - low

Neutrophils 8.2 - high

CRP 31 - High (should be less than 10)

ALP 137 - high

They did not test My Vit D again but that has been low for over a year now but the B12 in now in range but low end.

I could no doubt be better but I cant complain I am doing ok.

[shaws Administrator in reply to jmd1157]

JMD1157

This is from Dr Lowe and cursor down to October 20, 2004 Question: and January 25, 2002

web.archive.org/web/2010122...

[jmd1157]

Thank you Shaws, I was also told the same by my ENT Specialist, but it was a long time ago.

Thanks for replying GA, I've never heard of the other tests you have done.

When I was on 175mcg my levels were - T4 28.5 (range 11-24) T3 6.3 (range 3.5 - 6.5) and a suppressed TSH as it has to be less than 0.1 due to my previous cancer. I'm not due my next blood test for 6 weeks so I'm not sure what they will be on 150mcg. I must admit to being a bit of a wimp when it comes to seeing my Endo as he doesn't talk only to tell me my T4 is too high and everything I try to say to him gets rebuffed as 'it's because you are on too high a dose'.

[jmd1157]

Thank you once again Shaws, I'll try speak to him about T3 but I'm not hopeful.