9 Years of Hypo - warning signs when it started....

[lizanne]

Hi All

I thought I would start a blog firstly to share what I have found to work and not work - and to try and help anyone else if possible!! I guess the subtitle to this should be 'things I wished I knew back then'!!

I first got hypo symptoms 9 years ago. Started to lose outer 1/3 of eyebrows and felt incredibly cold and stiff despite exercise, eating well etc. I used to take the hottest baths I could bear just to warm up and get my muscles moving.

Off to the doctors - he nodded wisely - said it was classic hypo or else iron/ferritin problem. He ran TSH test - it came back in normal range and told me there was nothing wrong with me.....The eyebrow loss was one of those things, stop worrying about it and I maybe I just felt the cold more than most......A familiar story to many I know!

Symptoms continued, I started to research what could be causing it. 9 years ago there wasn't as much info on the internet and certainly not this fantastic forum and group of people - so I was in the dark. Couldn't figure out what was wrong with me and I knew it wasn't hypo because my doctor told me so.... At this stage I was late 30s with a young family and very puzzled as to what was wrong with me and why every day I was feeling worse.

I fell pregnant and from the start I knew something wasn't right compared to previous pregnancies. I felt SO ill, so tired, so listless, huge hormonal surges, pain in joints, incredible fatigue. I lost the baby at 12 weeks. I don't want to dwell on that, but I am sure it was linked to the hypothyroid/hormonal problems.

The good news is that I fell pregnant again about a year later and that all went well apart from having odd reactions - skin inflammation on my face that looked like the worst sun burn, ,my skin split and peeling all over my face and neck again like a bad burn, rashes over my body appearing, joint pain, feeling awful. A friend with a medical background spoke to a contact who was an endo and they suggsted tests for Lupus, Rheum. Arthritis, Hashimotos etc which I got done privately and all came back negative. However the concern was there was some sort of allergic/auto immune reaction going on but we couldn't find out what it was. My over riding anxiety was for the baby and not to have another miscarriage.

When I asked the obs doctor in charge of me he said the baby was doing ok, there were too many hormones to worry about (?!) and all seemed ok

The good news is I had a lovely healthy baby for which I am truly grateful. The bad news was that was when I really hit an all time low. I had my new baby but my health completely deteriorated. I felt like I had fallen off a cliff.

And there are things I really wish I knew then and that I could have fought for - it would made a big difference to my health and I think stopped the hypo getting as bad as it did. I was very ill, very vulnerable, too emotional and confused to push for the right treatment and had the misfortune to deal with 2 extremely unsympathetic doctors who didn't look or listen or understand (is it a coincidence that the best doctors are often the ones who have been ill themselves??).

I will post about that in my next blog as I really don't want anyone else to go through the hell that I did - I truly believe the sooner you get diagnosed and on treatment the quicker the recovery.

Lizanne

[Hidden]

Thank you for sharing your story Lizanne, I'm sure it will help others. I'm so sorry you've had such an awful time.

Sadly doctors 'relying' on blood tests to confirm what they suspect and then ignoring obvious symptoms, is all too common.

I too have the bath water as hot as possible to warm up and be able to move!

I look forward to your next instalment. Best wishes Jane x

[lizanne in reply to Hidden]

Thank you Jane.

At least we are managing to keep the bubble bath industry ticking along - I have a wide selection of salts, suds and soaps to use in my hot baths!

Lizanne x

[vajra]

Hi Lizanne. Thanks for posting, looking forward to the next. It seems to me that it's important that as many of us as possible tell our stories - that it can be very helpful to others.

It's a hard road anyway - but it can otherwise take many extra years of suffering and loss to strip away our pre-conceived notions about life (our presumed entitlement to health and a conventional life), and about the omnipotent and caring nature of medicine.

So that we can engage at the level of reality.

It can amount another manifestation of the called the 'appalling vista' phenomenon - when our conditioning makes it hard for us to accept the reality of what's actually going down.

That's a familiar sounding progression - the way it creeps up on you. It took almost nine years from the late 1980s and the loss of a career in management for ME to cop on and realise what was up. The system never did - I still hadn't been diagnosed as hypo by a doctor by the time I went down with serious secondary symptoms in 2005 and ended up having a thyroidectomy.

Perhaps I was unusually bone headed and unaware, but the self doubt and loss of self belief that losing the ability to work in an effective manner entails can be hard to cope with too. It's still an issue for me.

Well done for putting up the difficult topic of pregnancy, great to hear that yours worked out so well. It's another facet of the thryoid issue that doesn't get a lot of discussion - but hypothyroidism is well known to lead to a risk of developmental issues.

Thanks again.

ian

[lizanne in reply to vajra]

Thanks Ian,

I know what you mean about self doubt - I thought I was going bonkers! I felt so ill, looked ill, had blatent hypo symptoms that all the docs I saw recognised - but because the test said normal range, the doctors seemed unable to question or think beyond that.

I wish you well

Lizanne

[cein]

Hi Lizanne,

I have something called Stephen Johnson Syndrome .. it was caused by an autoimune reaction to Diclofenic and anti inflamatories .. take a look at some pics on google and see if its the same as you had. x

[cein in reply to cein]

Should have mentioned that any medication can actually cause Stephen Johnson Syndrome it depends what each individual reacts to.

[lizanne in reply to cein]

Hi Cein

I had never heard of that condition before, I just looked at the links you sent - how horrendous! I hope you are better now. I wasn't on any medication when I had the skin reactions, but it was derinitely a reaction to something.

I think it may have been some sort of auto immune reaction to my pregnancy. Fortunately with lots of HC cream it passed after a week. Then again - if it was the HC cream that helped maybe it was an adrenal reaction and the HC cream gave me the help I needed.

Best of health to you

Lizanne

[cein in reply to lizanne]

Hi Lizanne

Yes I am better now thanks.

I just can't have any anti-inflamatories now. I also seem to have become allergic to most antibiotics ... not that I need them often .

I hate taking pills.

Really pleased you don't think it was SJS

Lynn

[Neckperson]

Hi Lizanne,

I am so sorry that you suffered so much with this. You are right about getting to the bottom of things as quickly as possible. Medicine can be so one track sometimes and disappointing and good doctors are so important. I was a long time geting diagnosed - I was skinny, my hands shaking and my eyes were like saucers. They thought I had a drink problem at work!! and I dont drink! I looked abit frightened aswell ! (don't laugh) and I was afraid to pick up a cup and saucer ...could be heard coming with the rattling. I'm hyper but veered into hypo land a few times and it is completely awful. The docs told me (re-hyper) that I wasn't eating properly and to cut down on caffeine....and only bucked up when I offered to pay for full tests.

I feel for you Lizanne and you do need to be well to argue with the medics sometimes so dont be too hard on yourself.

I have in the past written in to medics to ask questions and explain things (when they didn't want to talk in appointments) and they have to reply!!

I can be a right pain in the neck! but I like to see what they say - they have to be a bit more careful when they are putting things in writing.

Take care

Neckperson