No end in sight!

[MissFG]

After seeing my rheumatologist today, he stated that I was very ill from my records when diagnosed with autoimmune thyroiditis 2 years ago. But I feel I’ve made very little improvement.

So I asked when will my immune system stop attacking my thyroid as T3 will only replace hormones my thyroid can’t produce due to irreparable damage from hashimotos.

His answer although not his field was that slowly over time your immune system is supposed to gradually stop attacking your thyroid. I said “but I want my life back. I want to go back to work. I can’t carry on feeling this way. Can’t you stop it?” No was his reply. But I know immune suppressants are used for other autoimmune diseases so why not Hashimotos?

So I’m asking on here Is this it? Is this all I have to look forward to? Is there nothing that can be done (besides all the standard advice ie optimal levels / gluten free etc which I’m doing).

Is it too desperate to get my thyroid removed if even when doing all I can, I still have active thyroiditis or is that too extreme? Can you have an elective thyroidectomy?

If removed would my immune system just start on other parts of my body or would all my symptoms calm down even stop? I just feel so sad that no matter how hard I try this just isn’t going away! 😢

[greygoose]

It rather sounds as if you're not optimally medicated yet. Can you post your latest labs so that we can see?

If you had your thyroid removed, you would still be hypo, and still be at the mercy of doctors who don't know enough to treat properly. The antibodies would go away, but is it possible that it's the antibodies making you so ill, rather than your lack of thyroid hormone?

[MissFG in reply to greygoose]

Hi Greygoose

My FT3 was 5.9 (3.5-6.5) TSH suppressed and on T3 only so know FT4 would be low so only pay attention to my FT3. I haven’t got a copy of vitamins etc as having difficulties with this and the practice mgr as my surgery is moving over into digital patient access.

But I went through everything with my rheumatologist and he agreed I was doing everything I could. My Vitamins haven’t been checked since October at my surgery and I haven’t stopped supplementing and my diet has improved.

All I’m thinking of is if there’s no thyroid then would my hashimotos symptoms subside? I know it’s not my thyroids fault but I’ll be on replacement drugs for life anyway?

I’m just wondering

[greygoose in reply to MissFG]

Yes, you will be on replacement hormone for life anyway, that's true. But, I don't think many people who've had their thyroid removed have found that it's the solution they hoped for.

Your immune system will eventually stop attacking your thyroid, when your thyroid is dead. Mine is now dead, so presumably my antibodies have disappeared, but I don't find it's given me any relief. And, suppressing your TSH would have pretty much the same effect on the antibodies, anyway.

Have you ever taken any levo with your T3? Some people find they feel better when taking both. Also, some people need to have their FT3 slightly over-range to feel well. Have you ever tried that?

Have you ever had your cortisol tested? What supplements are you taking, and how much? Just because your rheumatologist said you were doing everything possible, doesn't actually mean you are. Not saying he's not a good doctor, but it's not his field, and we - as a collective body - have probably had far more experience of this disease than he has.

[MissFG in reply to greygoose]

How long does it take for the immune system to kill your thyroid off? Bet this varies to each individual?

I tried levo with Unipharma and gradually just reduced levo over several months as I felt better. I then switched to Mexican cynomel in July and went downhill again and haven’t been right since. I’ve now moved onto Turkish tiromel just over a week ago. So just need to give it time as don’t think switching brands has helped at all. How long should I give tiromel before I could see improvement?

Sorry forgot about switching recently and the issues with cynomel could be why I’ve not been feeling great for a while standard brain fog lol

[greygoose in reply to MissFG]

Yes, that could have something to do with it.

And, yes, it is a very individual thing, how long it takes for the thyroid to be completely destroyed. Have you had an ultrasound to see how big your thyroid is now?

[MissFG in reply to greygoose]

I’ve had two so far (first was march 16 when diagnosed) and I’ve got another next week. My last one did show it wasn’t as enlarged as my first but still had thyroiditis and it was in November 16 so due another.

[greygoose in reply to MissFG]

And, have you adopted a gluten-free diet? Are you taking selenium to bring your antibodies down?

[MissFG in reply to greygoose]

I’m gluten and grain free but tried selenium once and felt ill. It was early on in my diagnosis plus only bought selenium from Holland and Barrett so might be worth trying again and a better brand maybe.

[greygoose in reply to MissFG]

Yes, worth a try.

[MissFG in reply to greygoose]

I’ve only had cortisol level checked first thing in the morning. I think there’s 3 tests throughout the day is it for an accurate result? Maybe something I can discuss with my GP. I’ve always wondered about this as I cope very badly with any stress. I just assumed this would correct itself as I improved overall?

If my cortisol level is abnormal can it be treated and how? Thanks

[greygoose in reply to MissFG]

There is a 24 hour saliva cortisol test, samples taken four times during the day. But, you wouldn't get it on the NHS. You also need your DHEA tested at the same time.

Your adrenals might improve as your other levels improve, but depends how far gone they are. What was your morning cortisol level?

There are things you can do about your cortisol/adrenals, yes. Depends on the level. But you won't find many doctors know anything about this. However, you'll get plenty of advise on here, from people who've already been through it.

[MissFG in reply to greygoose]

I’d need to check when I had it done as I think it was before I started keeping a record. But I did have some allergy testing done recently and cortisol came up as poor which I wasn’t surprised at due to my poor coping mechanisms with stress.

I’ll do some research on this again though as think it could contribute to how I’m feeling

[greygoose in reply to MissFG]

It certainly could.

[Nanaedake]

I've had more than half my thyroid removed but it isn't a solution. It's been horrible to be honest and caused me a lot of problems. I didn't have any choice but I wouldn't recommend it.

I would get your GP to check out all possible other causes for your discomfort as there could be another reason. We tend to focus on our thyroid as the cause of all the ill health because it has a knock on effect on our health but it's still important to exclude other causes.

[MissFG in reply to Nanaedake]

Thanks tbh no one wants to lose any organ but if you have no thyroid then your immune system can’t attack it?

I’m under rheumatology, seen a dental specialist, now referred to a neurologist and gastro it’s never ending. I just worry that my immune system might never stop attacking my thyroid until it’s either suppressed or my thyroids removed. Both extreme I know

[Nanaedake in reply to MissFG]

It sounds like there are a number of factors at play in your health. The autoimmune thyroid disease may continue to attack your thyroid and cause flare ups from time to time but the majority of thyroid disease is caused by Hashimotos so lots of people are living with it. It's good that you are getting referrals to find out what's going on and I empathise with the feeling that it's never ending and you just want to be well again. Hang on in there. It took me 10 years to get back on my feet but I have eventually and am finally back at work full time. I think you'll get there quicker as it sounds like you're getting help.

[MissFG in reply to Nanaedake]

So glad you’ve finally got there. I was just hoping to get back to work full time soon like next few months but some days I can’t function. So much going on and at the end of the day could all just be the hashimotos after all!

My body is just so tired.

[Nanaedake in reply to MissFG]

I think it's more complicated and might take a while to unravel with help. Don't give up though, just cut yourself some slack while you work it out. Sounds like you're still young and you will get your life back again.

[MissFG in reply to Nanaedake]

Thanks tbh if it wasn’t for this forum I dread to think where I’d be right now!

[Fruitandnutcase in reply to MissFG]

Just curious and hope you don’t mind me asking but why are you seeing a dental specialist?

I ask because my teeth are weird and ache (although I wouldn’t describe it as toothache) at the drop of a hat, I get sinusitis too which makes them ache, all that stops for a while then will come back again for no reason. They are well looked after as are my gums, I have no decay or any obvious reason for this. So you saying you see a dental specialist made me w8nder if there is a thyroid link. I’m I need remission from Graves Disease.

I also seem to get swollen glands every time I visit the hygienist annoying as I tend to go every three to four months - my teeth are ancient (a bit like me) but they’re all mine and I want to keep them for as long as I can.

[MissFG in reply to Fruitandnutcase]

Of course I don’t mind you asking that’s what we’re all here for is to help each other!

There testing me for Sjögrens. I struggle swallowing so cuts just be active thyroiditis still but could also be as I’m quite dry so can make swallowing difficult. I also suffer with dry eyes and ears and nose. I have jaw ache migraines sinus issues but again this could be down to allergies so I’m taking an antihistamine to see if that helps.

Pollen has just shown up in some allergy testing (but it was a hair strand test so not sure how reliable it is) and I always have fresh flowers in my lounge hence why my nose was stinging and sore. It’s a process of elimination I think.

It’s nice everyone is looking after me and are being so thorough. I do think a lot if not all my symptoms are thyroiditis and being coeliac but if their willing to test and eliminate other autoimmune diseases I’m happy just so I can get the help I need.

And atm no one thinks im a hypochondriac well yet anyway lol 😂

[Fruitandnutcase in reply to MissFG]

Gosh - read8ng that post is like reading a list of my own symptoms!

Be glad no one thinks you’re a hypochondriac. I often felt they thought I was to the extent I think if GPs think their patients are hypochondriacs then they ought to consider that they might have thyroid pribkems.

Two months before I was found to have Graves my doctor looked at me like I was nuts, leaned back on her chair and said ‘I think you’re needing your holiday.’ Annoying or what considering how awful I was feeling.

Then two check ups ago my rheumy- or one of the locums I’ve seen wrote to my doctor saying he thought I was probably developing Sjorgens. I’m not sure, my mouth definitely doesn’t seem dry enough at times it can feel terrible , my eyes are SO dry though, sinuses terrible although when I was being treated with block and replace they didn’t bother me, they’ve just started making themselves felt again.

Who would have an autoimmune condition - well several because as we all know they hunt in packs.

Good luck and long may you not be considered to be a hypochondriac 😉

[shaws]

Going gluten-free can help reduce thyroid antibodies.

I am sorry you are feeling bad but it could be that the T3 may not suit you. Sometimes we may have to try another brand.

This is a list of clinical symptoms which should be relieved when on an optimum dose of thyroid hormone replacements which suits you.

thyroiduk.org.uk/tuk/about_...

However, have you tried Natural Dessicated Thyroid Hormones as that suits some people as it contains all of the hormones a healthy gland would.

[MissFG in reply to shaws]

No I’ve not tried NDT but think that’ll be my next option. How long should I give the tiromel to see if it suits me?

[shaws in reply to MissFG]

It depends. I have read you start on a dose (of T3 or NDT) and every 2 weeks add a small amount (usually 1/4 tablet) taking note of symptoms which are relieved. Taking pulse/temp when you begin and if either rise too high drop to previous dose.

This is a link to a chapter by a doctor (now deceased) who treated patients and was also an Adviser to Thyroiduk.org.uk:-

web.archive.org/web/2010112...

[MissFG in reply to shaws]

I’ve just moved onto exactly the same dose of tiromel as I was cynomel as I’m in the upper range of my FT3. But I’ll get another blood test done every 4 weeks to monitor it.

I didn’t expect to move over with no issues and know my body is very sensitive to changes. My Endo commented on this also with any changes to my dose so I’ll give it time

[Scazzoh]

Hi Miss FG, have you heard of the Paleo Autoimmune Protocol? It is a lifestyle program for people who have autoimmune disease, whose aim is to reduce antibody attacks, inflammation and ultimately heal the body. It starts with a strict exclusion diet and covers sleep management, detoxing and stress reduction. There is a lot of good science behind the AIP. I have been following it for two years, as I have Hashi's and CFS and had a major 'crash' two years ago which left me virtually bedridden. I am now in recovery and feel SO much better. It is not a quick fix solution, however, and patience is required. If you need more information, there are some good websites: Phoenix Helix, Paleo Mom and Autoimmune Wellness are good ones. Eileen Laird's book, an introduction to the AIP would be a good place to start.

amazon.co.uk/Simple-Guide-P...

PM me if you want more information.

[MissFG in reply to Scazzoh]

So sorry to hear you’ve had a difficult time. My daughter got hit by an illegal driver just after I was diagnosed 2 years ago it’s hard isn’t it coping with it all. I’m glad to hear your recovering well! But it’s very stressful isn’t it.

Thank you for commenting though as at present I’m doing a cross between the Keto diet and paleo. And I use paleo mum

I basically eat clean unprocessed fresh food but do still include a small amount of dairy and I need to watch my sugar intake. Otherwise I’ve found I have improved especially with my stomach issues.

I know AIP is the way to go but it is a lifestyle not a diet. So thank you I’ll pick up my paleo books (still next to my sofa) and have another go! 😊

[Scazzoh in reply to MissFG]

Sorry to hear about your daughter. Hope she has recovered. I'm doing a keto version too. I find being in ketosis gives me more energy. I have realised the importance of stress management with this illness (it took a while for the penny to drop!) and have been doing mindfulness for a few months, which I find really helpful, particularly with sleep. Here is a link to a site I use regularly. They have free online guided meditation podcasts:

marc.ucla.edu/mindful-medit...

Are you taking any adaptogens for your adrenal issues? I found holy basil worked best for me but I have stopped taking them now, as my adrenals appear to be functioning as they should.

I take NDT (Nature Throid - 1 1/2 grains a day) and find it works so much better for me than Levo ever did, although it wasn't the magic bullet.

[MissFG in reply to Scazzoh]

Oh I’m glad your doing Keto too I found last year I felt good on it and Unipharma then switch and went down hill fast. I find stability and not changing anything is key I just need to get in a good place again like that.

I have an app called headspace and use it most nights to get to sleep and it really does work! Just a shame we can’t eliminate stress from our lives.

When you say adaptogens is omega 3 one? I looked at adrenal function yesterday as saw a list which included omega 3 and holy basil? How do you know when your adrenals are functioning correctly?

Is NDT expensive? I’ve just gone onto tiromel so will see how I get on. I’m hoping it’s similar to Unipharma as I was good on that just prices are higher. On levo I was bedridden I just couldn’t function and FT3 was low in range so wasn’t converting very well.

[Scazzoh in reply to MissFG]

Omega 3 is an essential fatty acid found in fish oils. Adaptogens are herbs which regulate the adrenal system so what you saw sounds like a mix. I know my adrenals are functioning correctly because I feel normal in the face of stress, rather than passing out, which I was doing previously. I think my adrenal glands were compensating for the fact that my thyroid wasn't functioning properly. My cortisol was high.

NDT is more expensive than it was. It used to cost me 30 p a grain (equivalent to 75 mcg of Levo). The last lot I bought cost 39 p a grain, so it's gone up by around a third and that doesn't include the import tax which is slapped on by customs, which is around £15, plus the £8 the Post Office take off you for the privilege of handling the package. I was getting T3 on the NHS but synthetic hormones don't suit me, so had to stop taking them. PM me if you want a list of suppliers of NDT.

By the way, I notice you asked about LDN a while ago. I have been taking it since last Summer and it has made a difference, but not huge. I find that it is the combination of things I take and do which work together rather than one thing being the 'miracle cure'. Like you I don't like to 'chop and change' too often as my system doesn't like it.

[MissFG in reply to Scazzoh]

Yes I was thinking it’s a combination of things together that helps with overall health.

Think I’m just worried about changing without giving tiromel a go now I’m in it

[Scazzoh in reply to MissFG]

Probably worth seeing how the Tiromel works first. Good luck.