Just having a bad day

[Dahliasanddaisies]

So I posted yesterday about starting my 100mcg levo. Excuse my ramble, I just feel really alone and sad. Life is barely worth living right now and it all feels a bit insurmountable. I'm sure there's elements of post viral fatigue, adrenal fatigue, perimenopause, thyroid stuff all at play...it feels very unfair!

I'm trying so hard to get better, I just don't know where to turn now. I know I need to give this new dose months to see if that helps, but every day is like a nightmare. I'm so scared I won't get better and my poor little boy will never have a mum that can't do anything with him.

When there is no help from GPs, and its all on your own shoulders to make decisions (and make the right ones!) About what path to take, which medication is right etc etc I hate it, I'm worried I've missed something, that I'll make myself more unwell.

Should I pay to see another Dr? A functional medicine specialist? Nutritionist? Feel like ive spent 1000's in the last year trying to get well and I'm not.

I miss my old life, my old self. If I can ever take my son to the park again I promise not to moan!!

I want to be able to do the school run, drive my car, go shopping, go out for lunch, clean my house, hang the washing out, cook dinner! All these little things we take for granted when we're well

[Buddy195 Administrator]

Hang in there Dahliasanddaisies; it takes time for thyroid medication and key thyroid vitamins to become optimal. So many of us can relate to how you feel; you are not alone. Keep posting whenever you need advice and support; we are here to help.

Regarding peri menopause, it may be useful to have a look at Dr Louise Newson’s free Balance App, as I find it really useful for comparing medications & having up to date research articles. There is also an ability to post questions.

healthunlocked.com/redirect...

[Dahliasanddaisies in reply to Buddy195]

Thanks buddy, I appreciate it. Yes I'm fully on board with Newson Health (got my HRT from them) greatful for all the support x

[CernCrystal]

Hi - empathise with your story. I posted this a while back to help others after going on my own journey with help from here. Not sure if any will help but there maybe something that resonates. I'm still doing well now and key to everything was/is being positive that you will find the right balance. I had to focus on that throughout my journey so that negative thoughts and anxiety were kept at bay - amazing how it helped. Best of luck with your journey (mine took roughly a year, once I realised that I was undermedicated - until then I believed Dr that I was on the right level).

Dear all,

I wanted to let you know about my recent success in case it can help anyone facing the difficulties I faced. So, I've no Thyroid, was gradually lowered to 75 (from 150 - was 86kgs) and then put down to 50mcg levo, where I became seriously ill. Drs used TSH testing only and put my illness down to Long Covid, which annoyingly I probably had as well. After talking to the wonderful people on here I pieced together important information that would aid my recovery and also my future management of both my condition and the drug.

After a serious fight I got my Dr to put my meds up to 75 - during this fight it became apparent that this Dr had not realised I had had a thyroidectomy. This information is highlighted on my notes now! I then worked hard to get an increase to 100 and was amazed at the difference. My weight is now 76kg - dripping off but what an improvement without trying! My heart palpitations have gone, food absorption improved with reduction in awful peripheral neuropathy (tingling and numbness in hands, arms, face, legs and feet - across heart at worst stage) and exercise is doable - I've just bought a years swimming membership. However the Dr pointed out that my TSH was v low and she expected I would need a reduction in 8 weeks when she wanted to retest TSH.

No - I refused to go backwards and knew my TSH would be low - it always is. So I came on here and asked advice about how to manage this to get a TSH result that would prevent a drug reduction, but this was contentious and I respected that. However, I did lower my drugs v carefully and not for long, and got the result I needed - a normal TSH reading (NOTE at this test I did not request a T4 as this would highlight the anomaly) so I now have 100mcg levo on repeat prescription - until the next blood test. What I also wanted to add here was that when I lower the levo or have had it raised, I notice the effects almost straight away - unlike the expected norm here where everyone talks about how long it can take to feel the effects of a dose change. Is that because I don't have a thyroid or am more sensitive. Even perhaps that I'm still not on optimal dose!

The purpose of my post is to give hope to others who may be in a similar position or in fact my own position (and not have the option of being able to finance their own meds and tests), that this is doable through subterfuge and obtaining good knowledge. During this journey, I have been given access to my records – something everyone can do – and the surgery system (EMIS) has provided very useful graphs showing that my T4 and T3 on the few tests done, had also gone down drastically despite TSH remaining same low level – this has been extremely useful in my fight as the Dr had never looked at these graphs, only the TSH. I could not have done any of this without the help and support of this site and administrators though, so thank you all for holding me during this journey. I have been shocked at the stress and anxiety that I have felt with the threat of my life being altered negatively by poor doctoring and an erroneous test that is a poor fit for many. Best of luck to everyone else on their journeys!

Tips:

Always go to the Dr with a list to aid your memory and make best use of the limited appointment time. I use headings of Current situation, Current Symptoms, Self-treatment/ current medication. You will be amazed at what the Dr won’t consider or know in the little time they engage with you and your notes beforehand.

Join Emis or whatever system your surgery has your records on. Access this and study it.

Keep and diary/notes of symptoms and changes you notice. Including dietary aspects, dosage impact and other things such as energy levels and symptoms – tingling, shortness of breath, sleeping, stomach etc This can have a huge impact. On my own journey I discovered that I don’t tolerate soya, gluten and need to avoid starchy carbs where possible. All changes that have really improved my life.

[Dahliasanddaisies in reply to CernCrystal]

Thank you CernCrystal! It's great to hear other people's journeys,.it gives me hope some days I manage to stay positive but other daysnits so hard, when I feel I'm going backwards it's really triggering! Plus I think my estrogen/progesterone is all over the place x

[serenfach]

Just know that many, many of us have been where you are now, and have pulled through. It takes time and effort, and unfortunately effort is very difficult where you are now. Look at it a different way - you are rock bottom but can see a way forward, it WILL be better, just give the drugs time. The climb is slow, but one day you will realise that you do feel better, you are able to think "what do I fancy eating - I will cook that!" It WILL happen. Promise.

Sending a special Welsh hug - a cwtsh.

[Dahliasanddaisies in reply to serenfach]

Aww thank you for that! I literally can't wait for that day, feeling more positive today and trying to just hold on to better times ahead x

[serenfach]

With thyroid problems, you have to think of tiptoe'ing forward. So frustrating! But there is a whole army here to help you forward. Keep posting, this brilliant forum is so supportive.

[Dahliasanddaisies in reply to serenfach]

It certainly is! I'm sure it's saved many people

[Obsdian]

I've been grieving the losses of things in my life too and wondering if I will get the back. I am also in late perimenopause but on hrt and that helps a lot to make that less troublesome.

One of my symptoms of hashimoto's is emotional lability and I get uncontrollable sadness snd crying for hours to a few days (usually 2 days plus a week of being very fragile), that makes me usual upsets a million times worse.

Keep posting

[Dahliasanddaisies in reply to Obsdian]

Oh crikey, maybe that's what I have too?! Some days I just can't stop the tears, then I feel exhausted. My HRT is being upped next month, maybe it'll help with the roller coaster of emotions :/Hope you too feel better soon x