An Open Letter to Family and Friends of Thyroid Patients

[shaws]

An extract including Hyper and Hypo and Thyroid Cancer:-

Sample Letter

Dear Friend/Family Member:

Someone you care about has thyroid disease. You may not know much about thyroid problems, but like many of us, you've heard things here and there. If anything, you probably associate the thyroid with weight problems or think it's an excuse lazy people use for being overweight. Or, you may already know someone else who's taking thyroid medication, maybe Synthroid, and they seem to be doing fine, so you assume thyroid disease will be a similar experience for your friend/family member.

Maybe you've seen a celebrity on television, like Modern Family star Sofia Vergara, talking about how easy it is to manage her own thyroid disease, and assumed it's equally easy for everyone with a thyroid problem?

There's so much more to thyroid disease, and while we can't cover it all in this letter, let's try, briefly, to give you a sense of what your loved one is facing. So could you please set aside for a few moments the information you do have about thyroid disease, and open your mind and heart?

verywellhealth.com/when-you...

[Dixdix]

Thank you for this. I’m currently seeking a diagnosis for hypothyroidism - and my beloved elderly father advised me, just this week, that I’d be better off putting my efforts into generating some ‘get-up-and-go’ and a ‘positive mental attitude’ - and listening to my doctors who ‘know what they’re doing.’

[shaws in reply to Dixdix]

If the doctors and consultants I paid couldn't diagnose one of the most common autoimmune diseases, we cannot rely upon any to diagnose a highly hypo patient. Before blood tests and levo was introduced, doctors knew all clinical symptoms and we were given a trial of NDT (natural dessicated thyroid hormones). If we improved we were hypo.

Always get the earliest possible appointment, fasting and if you were taking thyroid hormone replacements you'd allow a gap of 24 hours between last dose and test and take afterwards.

You can click on my name and it will take you to my journey to being diagnosed.

[tattybogle in reply to Dixdix]

Sorry you got that response from your Dad, although i can understand how even lovely people just can't understand what it's like.

When in reality, i presume that like most of us you have already tried putting effort into Getting up and going, and got nowhere.

I believed (for about 15 yrs) it was 'just me' having problems after my thyroid results were rendered 'normal' and that 'self doubt' was very damaging .It's been an immense relief, and very empowering to find others the same and science to back it up .

[Mickeydooley in reply to tattybogle]

I get that response from members of my family too. For example, my brother in law was put on 50mcg levo a few years back in his early 70s and told me he didn’t even realise there was anything wrong with him and he suffered no symptoms and since I was only on 75mcg Levo I wasn’t any worse than he was. I’ve had UAT symptoms since I was in my 20s and was only formally diagnosed at the age of 45 with a TSH of nearly 100. I was put on 75mcg levo and it wasn’t increased until last year when I insisted on a referral to an endo. . I’m now nearly 61. I only discovered 18 months ago when I did a medichecks test that I had Hashimoto's. The endo put me on t3/t4 combo treatment. I’m still not good but he still tells me I’m obsessed and a hypochondriac and I can’t possibly be as bad as I make out. 😩

[shaws in reply to Mickeydooley]

He's not a good Endo if he doesn't listen to the patient. He obviously doesn't realise that we patients need truthful explanations, not just words but encouragement that he can restore our health because it is a type or 'friendship' as we have to rely on them to do their utmost best.

The more I reduced T4 the better I became and I had also tried a T3/T4 combo, NDT, and then T3 only.

I disagree with his whole statement to you because we are putting all our faith in them to help us recover. His remarks to you are not professional at all. On this forum there's such a variety of doses. Dr John Lowe was 'thyroid hormone resistant' and he had to take 150mcg of T3 (he took it in the middle of the night so that nothing interfered with the uptake). He was then able to do his research and papers and publish them. It upset him to think people were suffering unnecessarily and that more notice is taken of a blood test result rather than clinical symptoms.

[Mickeydooley in reply to shaws]

I’m so sorry I meant my brother in law tells me I’m obsessed and a hypochondriac. Not the endo. Too tired to make sense. Haven’t been sleeping and just exhausted. Didn’t re read my message.

[shaws in reply to Mickeydooley]

Don't worry I make mistakes too. I also come upon people who don't believe some replacement thyroid hormones can make me feel worse.

[tattybogle in reply to Mickeydooley]

If only we could arrange for some people to 'walk a mile in our shoes'

I have little list of some whom i'd like to 'send on a little walk' ;

NICE guideline makers.

Most doctors i've met.

Anyone who has ever written anything about 'Somatoform disorders', 'functional disorders' or 'CBT'

Michael Gove

And some of those lucky people who are 'just fine thankyou' on Levo with a normal TSH.

[Mickeydooley in reply to tattybogle]

👍😂

[vocalEK in reply to tattybogle]

What Mickeydooley said!

[Fluffysheep]

A great letter, so informative and relatable. Today I went out for the first time in my wheelchair that we've had to buy because my mobility has got so bad and I get so sore. But whenever you tell people that you've got all these health problems and they stem from your thyroid they look at you like you've got two heads. I'm lucky to have an amazingly supportive husband who totally gets it, but not everyone is lucky enough to have that support.

[tattybogle in reply to Fluffysheep]

My daughter told me yesterday that she just tells people that Mum's got 'an Autoimmune Disease', and apparently that get's a much more understanding response from her peer group.

She got fed up of arguing with the..... "oh ,I know someone with thyroid problem but they're fine" or "isn't ME just a made up thing tho'? " type of response.

I'm thinking of employing the same tactic , after all, it's not untrue .

You're so right about the importance of family who 'get it' . It's a really lonely place to be when even members of your family can't understand or believe you.

I'm very lucky that my daughter does (now ) get it, but sad for her that she had to learn for herself that Doctors don't know everything, and can make you worse, and undermine your self esteem. She had a back problem that has made her change career direction, and it was scary how quickly the NHS gave up on her and stared treating her like a drug seeking depressive. She's got better on her own, with private physio and hard work, but her faith in Doctors has been destroyed.

[shaws in reply to tattybogle]

So many people do fine on levothyroxine, whilst others like us find it awful and struggle when initially prescribed. Thankfully thanks to Thyroiduk I found help/assistance. This forum wasn't around at that time but we're desperate to know why we aren't improving, whilst GP tells us that 'bloods are fine' whilst ignoring how unwell we still feel.

[Mickeydooley in reply to tattybogle]

I now tell people that I have an autoimmune condition. It seems to resonate better with people. If I say I have an underactive thyroid they seem to think it’s an excuse for being lazy.

[shaws in reply to Fluffysheep]

You are lucky that your husband is supportive and mine is also. I think, at times, some family members might think there's nothing wrong with us and are unware our whole metabolism is under attack and we can feel awful. If people cannot 'see' what is happening they don't understand.

[Mickeydooley]

A friend I haven’t spoken to in years and I were catching up last night. She’s had cancer and is now well thankfully. I told her how I was doing without making a big deal about it. I tried to explain what Hashimoto’s was but felt bad because she’d gone through so much. I suppose I felt guilty about complaining to her and I felt a bit pathetic. I made light of it. Trying to explain to someone is so difficult. I saw this open letter this morning and sent it to her today. It was very helpful.

[shaws in reply to Mickeydooley]

I'm glad you found it helpful. I had never heard of hypothyroidism but neither did any of the doctors and specialists and I even underwent an operation for something I didn't have at all. Thankfully they didn't remove anything as there was nothing for them to see at all.

I asked the surgeon afterwards, well 'what was on the barium swallow test' and he couldn't reply as he hadn't a clue. Once I was diagnosed I guessed he had seen a 'swelling in my throat' probably the thyroid gland and he had assumed I had a 'web'. I had also been feeling extremely unwell but at that time I didn't know I was severely hypo.

[Mickeydooley in reply to shaws]

That’s awful! It makes me so angry that so called experts know so little! I’ve been suffering with hypo symptoms since I was in my twenties and felt awful but when my hair started falling out (I was practically bald at the front) at least I had something physical I could point to. Even then it took until I was 45 to get a diagnosis. My TSH was almost 100 when I was eventually diagnosed and the gp apologised. At least she had the decency to do that! She told me ‘there’s good news and bad news! The bad news is that you are hypothyroid but the good news is that you’ll get free prescriptions for the rest of your life. I’m sorry to be the bearer of bad news’. I was soooo delighted and relieved that I wasn’t going crazy that I could’ve hugged her! I spent so many years feeling guilty about my ‘laziness’ and lack of motivation. Like so many on here I was told I needed counselling because my thyroid levels were all normal and I needed counselling because I was obviously depressed. I was put on antidepressants and had so many procedures to find out what was wrong with me it must have cost the nhs a fortune. This letter made me feel like I wasn’t being a hypochondriac and I could explain to my friend without sounding pathetic!

[shaws]

What a cheek to say that 'you'd get free prescriptions for life'. That's something we could well do without and we'd rather not have hypothyroidism at all.

Once upon a time, hypothyroidism was fatal and we did not survive.

Thankfully some doctors deduced it was due to the thyroid gland and that's when NDT was introduced (1892) and it saved lives from then on.

Unfortunately, the professionals you'd expect to know better, removed NDT (natural dessicated thyroid hormones) from being prescribed just as they did with T3 and without notice sending many patients in a panic. Did the professionals care - not one iota so I don't know why they call themselves professionals - any other word would do but certainly they didn't act as professionals but as hard-hearted and unfeeling and showing no compassion.

On this forum we have support and its good to find people who're going or have undergone similar journeys.

i.e. depressed - you were probably low in your T3 and T3 is prescribed by some psychiatrists

[Mickeydooley in reply to shaws]

I was sick and tired of being sick and tired! My condition was depressing but I wasn’t depressed and I knew that. Unfortunately I didn’t know enough then to know what was going on with me but thanks to this forum and the admins and members I’ve learned so much. I eventually insisted on a referral to an endo clinic and am now on t4/t3 treatment as I’m not a good converter. The clinic is not wonderful. I’ve seen 4 different endos in 6 visits all with differing opinions about my condition but now I can stand my ground knowing as much as I do from what I’ve leaned here

[shaws in reply to Mickeydooley]

As the saying goes 'education, education, education. My GP phoned to state that "your TSH is too low: your T3 too high and T4 too low". I said "I know doctor that's because I take T3 only". He said No! T3 converts to T4. I said "I'm sorry doctor T4 converts to T3. I take T3 alone and it doesn't convert, it just goes into the T3 receptor cells".

It's no wonder that there are so many under-dosed or undetected hypo patients feeling very unwell.

[Mickeydooley in reply to shaws]

Omg!

[vocalEK in reply to shaws]

If you need a little more specific explanation, here is HOW T4 is converted to T3: One of the 4 iodine atoms on the T4 molecule is knocked off, then voila! T3.

[vocalEK]

The author of this article, Mary J. Shoman has authored several books: mary-shomon.com/books

[shaws]

I've followed the advice of Dr John Lowe (RIP) who was a scientist/researcher and expert on the use of liothyronine (T3). He himself was 'thyroid hormone resistant' and took 150mcg of T3 (in the middle of the night). He was also an Adviser to Thyroiduk before his untimely death.

I also know about Mary Shoman and thankfully we now have people whose advice is helpful for those struggling and not recovering on levothyroxine.