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Kaz

Systemic and hypothyroidism

18 posts in this topic

Hello from Down Under.

 

I am new to this forum and have a question I would like answered. I was diagnosed with systemic scleroderma and Raynauds in 1985. I was also diagnosed with hypothyroidism approximately 3 years ago and after reading through many posts, I am now wondering whether the diagnosis for hypothyroidism was misread. I am not typical to the symptoms of an under active thyroid, such as tiredness, weight gain, depression etc. Rather the opposite, I am always active, same light weight for 40+ years, bubbly personality and I deal with life, whatever it throws at me. It may be only 1 tablet I take daily but am curious to know whether it may have a detrimental affect on me in the long term. I would appreciate any information that may put a light on this for me.

 

Onwards and Upwards!

 

Kaz

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Hi Kaz,

 

This is an easy one. They diagnose the state of your thyroid (hypo or hyper) with blood tests. Symptoms can be a pointer, but unlike scleroderma, they aren't essential to the diagnosis. What I would wonder is how often they test your levels of TSH (thyroid stimulating levels)? Mine are tested several times a year. Here's a link to Hypothyroidism: Tests and Diagosis from the Mayo Clinic (one of our 'premier' medical institutions).

 

It's my understanding that both hypo- and hyper- thyroidism should be treated and can be detrimental to your health if not treated or treated improperly.

 

Who is the gorgeous baby in your avatar? What a cutey!

 

Best wishes,


Jeannie McClelland

(Retired) ISN Director of Support Services

(Retired) ISN Sclero Forums Manager

(Retired) ISN Blog Manager

(Retired) ISN Assistant News Guide

(Retired) ISN Artist

International Scleroderma Network

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Kaz,

welcome to the forums. Sounds like you manage your disease process well and have a full, satisfying life. I hope you post more often. Sorry I am no help with the thyroid business, but I think Jeannie gave you a good response. And, by the way that is a cutey in the pic.

 

Jill

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Hi Kaz

 

Please take a minute to read my posts, I have severe hypothyroid disease and the last 4 months have been a nightmare. If you are diagnosed hypo or hyper, keep a close check on it, ignore or dismiss it at your cost, if you are well and balanced rejoice and always check new meds do not interfere with your thyroxin.

 

To ignore or miss symptoms makes life very uncomfortable and distressing!

 

Hugs and warmth,

 

Lynn

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Hi Kaz,

 

Thankfully I don't suffer with hypothyroidism, so can't advise you from my own experience.

 

Jeannie has given you very good advice and we have a link here as well which I hope you'll find interesting.

 

Love the avatar! :yes:


Jo Frowde

ISN Assistant Webmaster

SD World Webmaster

ISN Sclero Forums Manager

ISN News Manager

ISN Hotline Support Specialist

International Scleroderma Network (ISN)

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Thank you all so much for enlightening me.

 

I have many questions for my general practitioner when I see him next. Just thought I would fill you in on how I was diagnosed with hypothyroidism. I had not had a period for around 5 months and assumed that menopause was knocking at my door. My general practitioner took blood and detected my thyroid issue and also found that I was post menopausal. Bit of a shock at first as I have had absolutely no symptoms, still haven't, and my body or mental state has not altered in any way in the last 4 years.

 

I thank my mother for her wonderful genes, although my two sisters have not been as fortunate in regards to periods and menopause. If this blood test was not ordered then I would quite probably be still undetected.

 

Lynnie, thank you for your insight regarding medication interference. I must admit I did take my thyroxin with my other meds and will now keep them separated by a few hours. Diet plays a huge part of my scleroderma and fortunately I work in a health food store and have access to the best fresh organic produce and gluten free products amongst many other beneficial items.

 

Thank you all for the comments on my avatar which is my gorgeous grandson, Ace. He, along with the rest of my wonderful family are what keep me strong and unbelievably happy through the daily struggle of life with scleroderma.

 

Onward and upwards!

Kaz

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I have Hypothyroidism and feel fine unless it goes to pot.

 

If you feel fine then you are stable so don't leave off your thyroxine; your body does not make it and you need your pills.

 

You also don't pay for pills from the doctors; it's now free if you take thyroxine.

 

Christine

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Hello Kaz

 

I had to come in and say a big HELLO...anyone with a sign off of onwards and upwards deserves it! :emoticon-congratulations:

 

I have just become a grandma for the first time and it rocks!

 

Take care.


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Hi Kaz!

 

Welcome to the Sclero Forums. I'm really glad you've joined us. I too suffer with hypothyroidism, along with CREST (and a few other things). I look forward to seeing how things go with your general practitioner as time goes by.


Warm and gentle hugs,

 

Pamela

ISN Support Specialist

International Scleroderma Network (ISN)

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Hi Kaz,

 

Perhaps your hypothyroidism was just caught early, before it had caused you any noticeable problems, and treatment is still keeping any potential problems at bay. in any event, you should be having regular follow-up testing to be sure your levels are fine (not too much or too little) and consider a consult with an endocrinologist as regulating thyroid falls into their domain of expertise.

 

As someone else pointed out, never stop taking thyroid medication on your own accord (as in never, never). Many of us with systemic scleroderma also have Hashimoto's thyroiditis, which is an autoimmune attack on the thyroid gland. I have both and I am very sensitive to my thyroid levels in that I can usually tell if it is running either too high or too low.

 

If you are concerned about being improperly or overly treated for thyroid, study the symptoms of hyperthyroidism and be sure to see the doctor if you suffer any of them, such as rapid heartbeat, jumpiness, insomnia, or unintended weight loss. Please keep in mind that I have no medical training at all, not even enough to read a thermometer. But as I understand it, absent mentrual periods are considered to generally be indicative of hyper (too much) thyroid, and very heavy periods can be a symptom of hypo (too little) thyroidism. So it is a little odd (to totally uneducated me) that your symptoms would seem to be more typically associated with too much thyroid, and then you were put on thyroid medication.


Warm Hugs,

 

Shelley Ensz

Founder and President

International Scleroderma Network (ISN)

Hotline and Donations: 1-800-564-7099

 

The most important thing in the world to know about scleroderma is sclero.org.

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Hi Kaz! I too have hypothyroidism. When I first consulted my doctor, he said it sounded like hyperthyroidism. The test came back stating the opposite! I take my thyroid medication every day and feel much better from it. I only have to have a yearly blood test to make sure the dosage is appropriate, but I will never forget how I felt before the problem was discovered.

 

Warm hugs to you!

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Hi

 

Hypothyroidism, I started losing my hair before I was diagnosed the doctors at the time were under the opinion that I was too young to have such a thing - but afraid not. I have the autoimmune type, the best thing about this in the UK you get free prescriptions if you take a thyroid substitute a small plus for somebody with scleroderma and other things. I have been stabilised - I mean my thyroid for a long time and I have an annual blood test to make sure the level of hormone replacement is still ok. My medication is adjusted accordingly and I am thankful to have maintained a full head of hair even after 34 years from diagnosis.

 

My hair loss was my symptom , there were too many other things going on at the time to know if this also related to or caused by the lack of hormone - the tiredness, dry skin and feeling low.

 

Regular blood tests should be a must before and after stabilisation.

 

Gil

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Just to clarify that according to NHS Choices: Medical exemption (MedEx) certificates are issued on application to people who have: •myxoedema (hypothyroidism requiring thyroid hormone replacement).


Amanda Thorpe

ISN Sclero Forums Senior Support Specialist

ISN Video Presentations Manager

ISN Blogger

(Retired) ISN Sclero Forums Assistant Manager

(Retired) ISN Email Support Specialist

International Scleroderma Network (ISN)

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Thanks for the clarification Amanda. Yes free medication when you meet this criteria in the UK - its a bonus

 

Gill

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Hi everyone,

 

I'm not sure if you are all aware, as I wasn't until recently, that you can get a prepaid card for your prescriptions in the UK from the NHS. It is only £10.00 a month and you present that card whenever you get your prescriptions filled and that is all you do, nothing else to pay. It has been a life saver for me with all the medications that I take monthly now. You can get a form at the pharmacist and there are no special criteria to be on it, they just say if you get more than 3 prescriptions a month it works out to a savings.

 

Hope this helps some.

 

Jean

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