Feeling let down

[Fizzwhizz]

Just a bit of a rant really as feeling let down by the system. I’ve been back and forth to the GP’s over the years with Raynuards, rosacea, recently a sun spot that turned cancerous, depression, fainting etc and no one up until me doing my research has ever joined the all the constellation of symptoms together. I’ve been saying for the past 5 years I thought my thyroid wasn’t working but it’s only now I’ve finally got a private result for antibodies that shows elevated levels. When I asked the NHS GP to test antibodies she just ran the usual full panel which was normal. She did then refer me to an NHS endocrinologist but I think in our area they all specialise in diabetes. In addition to this I was paying privately for menopause treatment believing that was my issue but not understanding why HRT wasn’t really resolving symptoms. The private GP didn’t look beyond the sex hormones either which I understand now but also adds to my disappointment of how bonkers and disjointed health care can be. I’m hoping to get diagnosed soon but now have a feeling of swelling under my chin and pain under my ribs which I think are likely thyroid related too. If I’d been listened to sooner maybe I wouldn’t have these issues. It’s hard not to be mistrustful of GP’s now when you feel let down. Rant over. 😀

[FallingInReverse]

Yup. Mine was 7 years of whack-a-mole symptoms and 1 year feeling like I was 90 years old and dying.

I consider myself lucky as I know many here suffered debilitating symptoms for years and years and years… sometimes decades.

For something that by some estimates impacts up to 1 in 5 women… you’d think!

[Fizzwhizz in reply to FallingInReverse]

Thanks for replying. Before Xmas I felt about 90! Couldn’t get off the sofa. Been feeling better since I ditched the private HRT but have a cold currently so on a bit of a downer. Blooming whack a mole. Yes, let’s make the symptoms disappear in the cheapest way possible without investigating the underlying cause. But then get self informed/private tests etc and that’s not believed either 🙈

[TiggerMe]

It took me at least a year to get over the anger when I realized the awful inadequate treatment I'd received for years, which put me in the same state as FallingInReverse It was only when I found this forum that I found a way forward and back to health... the anger I have channelled into re-educating the GP's and Endo's that I cross paths with and any poor unsuspecting person who mentions anything that sounds like low thyroid complaint... got to turn a negative into a positive or it really eats away at you 🤬

[Fizzwhizz in reply to TiggerMe]

Thanks, I have two appointments coming up. One private one NHS. Unfortunately I’m in no mood to tolerate any more fobbing off rubbish. As far as I see it I need further tests now for Graves, (am now losing weight and have eye issues) thyroid scan (I can feel swelling) Sjorsens as have dry eyes, skin etc, coeliac as I’m low on b vits, d vits, folate was poor too, wondering about my bone density too as have had thyroid issues throughout menopause. If they’d have listened 5 years ago might not be in this place! Problem is going at it all in one go like this the consultant’s going to think I’m hypochondriac.

[humanbean in reply to Fizzwhizz]

Please be aware that, although Thyroid Eye Disease (TED) is mostly associated with hyperthyroidism, it can happen in hypothyroidism too.

Also, in the early stages of Hashimoto's Thyroiditis, the patient may have mild hyperthyroidism, and as the immune system targets the thyroid for destruction the patient eventually becomes permanently hypothyroid.

There have been quite a few members of this forum who have been initially wrongly diagnosed and wrongly treated.

[Fizzwhizz in reply to humanbean]

Thanks, hence my feeling I need testing for Graves and Sjorsens too as I have symptoms that could be these or have I misunderstood? I’ve been reading so many posts it’s easy for the brain to become addled. I don’t know if I have Graves too and am pendulum swinging between this and hypo or if it’s as my thyroid is getting attacked more I’m getting these hyperactive symptoms. I’ve had classic hypo symptoms only for about a decade. Losing weight, swelling feeling under chin are new. 🤷‍♀️

[humanbean in reply to Fizzwhizz]

If you have symptoms of Graves then yes, you need the appropriate antibodies to be tested to confirm or refute it. Ditto with hypothyroidism.

But I was just pointing out that a lot of people, including doctors, assume TED comes with being hyperthyroid, when it can also occur with being hypothyroid.

I was just trying to alert you to other possibilities that doctors often miss.

One thing that has happened occasionally is that doctors have seen a low TSH and have jumped to the conclusion the patient must be hyperthyroid, but it could also be Central Hypothyroidism which needs thyroid hormone levels to be increased not reduced.

[Fizzwhizz in reply to humanbean]

No, I’m grateful you mentioned it. Thanks. That’s why I want testing for Graves and Sjorsens because I now have positive antibodies test for hypo Hashis but don’t yet have a diagnosis and I don’t know if the eyes and weight loss are due to this or another condition. I’m especially not keen on them putting levo into me if I don’t know what’s going on as it could make things worse just like the HRT. Plus if it’s Hashis then need to not just treat the depleted thyroid hormones but treatment to stop the immune response which might be dietary changes if coeliac. It’s complicated though.

[Sallybones]

Hi Fizzwhizz (love the name) a rant does help every now and again. Hope it helped a bit.

For those that don't weaken from our disconnected health system I succumbed to seek a private endo not too far from home. I'm not rich but have no life. All the previous ones I saw were only interested in diabetes or Osteporosis for me. I don't have diabetes but do have osteo.

My private endo turned out to be a refreshing pair of eyes and who treated me like an equal adult who was genuinley interested in all the private test results and history going back 20 years. He put me back on Levo which GP wouldn't. Did a really detailed letter back to my GP. Suggested other related female hormone tests including testosterone she should do and asked them to continue prescribing Levo.

He suggested from my continued low tsh and low t4 over 20 years I may have Isolated TSH Deficiency! Doubt my GP had heard of that never mind Central Hypothyroidism which was suggested to me on this site some time ago.

I've a follow up with him in 3 months time. Meanwhile GP is doing as he requested.

Trial and error to see what happens.

Don't give up! Love SallyB

[Fizzwhizz in reply to Sallybones]

Thanks, I’m glad you got some helpful help. I think I’m upset because even going privately is a lottery. The private menopause GP just put HRT into me and ultimately I think that was making me feel worse as my thyroid got worse. Also I wasn’t cleaning the oestrogen and that’s scary. I was spotting latterly hence coming off it all completely at my instigation not hers. She was suggesting I build it back up again gradually after the spotting subsided 😳 I’ve only got an NHS appointment because the wait for a private thyroid GP was so long and I felt so utterly awful I went back to the NHS GP. Thanks for replying. It does help to rant!

[Sallybones]

you're right it is a lottery but what "attracted" me to this one was he stated he didn't cover diabetes at that particular clinic which he only does 1 day a week otherwise he is NHS based. I've gone through some very insulting appointments with nhs endos over the years and its very demoralising to be offered antidepressants or a leaflet on healthy eating when you know that isn't the answer ie its all in your head.

Ive gone back to the drawing board many times so keep on keeping on and I wish you success. xx

[Fizzwhizz in reply to Sallybones]

Thanks, I know. It’s almost like you need to be a doctor to ensure you self refer to the correct person. The private HRT experience has really made me wary. I had the GP’s making me feel it was in my head too because of course all my thyroid bloods that they tested were always within range. I’ve been offered anti depressants, counselling etc. If I’m fobbed off again I’ll ask for a second opinion. They can’t explain the antibodies away that easily but it’s been a slog to get these results. It’s like a eureka moment finally getting some abnormal results because I knew I wasn’t right. I’m not holding my breath re the NHS endo, they’re diabetes experts from what I can see but I’ve got my list of symptoms/tests I feel are reasonable now to ensure appropriate treatment etc. 🤞

[FallingInReverse]

Also… you can take a deep breath now that you have found the forum.

We all still have a long path towards feeling better… BUT we are finally on the right path. Isn’t it wonderful!

No more feeling in the dark, confused and worried.

So first things first… blood tests.

Keep your check list as you posted above handy. And check ‘em off one by one. Don’t worry too much about rushing through any of this especially if it adds more stress.

It won’t be a straight line. And it will take a while.

But you are on your way.

And as TiggerMe notes - now utterly qualified to consult with any stranger you encounter who even hints at the word “chronic fatigue” “thyroid” “always cold” and the like!

[Opposite]

I'm sorry for you.

I have no advice as my care has been absolutely diabolical so far but just wanted to say you're not alone. I've suffered for about 5 years and only just starting to get answers related to thyroid.

Good luck!

[serenfach]

Welcome to the ITS ALL IN YOUR HEAD club. Unfortunately it is not very exclusive, with many of us here in this club.

You made the mistake of thinking GPs had the time or the mental capacity to care. They are badly trained on the thyroid, even if it is a large proportion of patients they see every day have thyroid problems. You are random symptoms and if they dont add up to an easy answer, it is in your head.

Yes, I am disillusioned, yes, I am angry. Yes, I am challenging them on not testing T3 here. A friend said that when I dig my heels in, all you can see is the top of my head. This forehead is pointing to my Health Authority and staring daggers!