Struggling to cope on Levothyroxine

[Myonlysunshine]

Hi there, ive had great support on here from you lovely people about recent blood tests and a very recent diagnosis of an underactive thyroid and Hashimotos from my private GP and really need some more help if that's ok..

The private GP started me on 50mg Levothyroxine for just a week..I was terrible on it immense fatigue and pain (already a huge factor for me with diagnosis of M.E. and fibro 12 years ago.)itchy, drowsy and feeling very sick.

He decided to increase me to 100mg which made things a lot worse, i lasted about 5 days on it and ended up in a Hyper state, no sleep for four nights and beyond agitated and panicky breathlessness.. really awful so I've stopped the medication two nights ago and I'm waiting for him to ring me today.

.I'm trying to read as much as I can to see what I can do, I'm sleeping mostly now and cannot focus for long so I don't know how to address this I feel worse then before and very anxious and down 😰.

Was he right to increase that quickly and that high? I'm sensitive to medication anyway..I just don't know what to do because I feel so ill right now. Sorry for the moan thanks for reading xx

[shaws]

Usually, 50mcg is a starting dose and a 25mcg increase every six week until we feel much better.

I too felt much worse when given levothyroxine and all my muscles and joints became so painful.

I am not medically qualified but the fact that you have been/were previously diagnosed as having ME/Fibro has pointed to another direction .

These two diagnosis were only 'named' about ten years after the introduction of the blood tests and levothyroxine.

I think that people remained undiagnosed due to their TSH and before that we were diagnosed according to clinical symptoms alone and prescribed NDT. (natural dessicated thyroid hormones). So you may have been in need of some thyroid hormone replacements before your TSH finally rose sufficiently for you to be diagnosed.

One of our Advisers, deceased, ran the Fibromyalgia Research Foundation and Thyroid Science and I'll give you a couple of links. He stated that people with Fibro had thyroid hormone resistance and that only T3 (liothyronine) made them better. They would therefore need larger doses than other patients who were hypo.

web.archive.org/web/2010103...

web.archive.org/web/2010103...

web.archive.org/web/2010081...

[Myonlysunshine in reply to shaws]

Thanks Shaws for your helpful advice, I've never accepted the diagnosis of M.E. nearly all the women on my mums side of the family had or have an underactive thyroid.

Weirdly, looking back to when I first got poorly..I didn't realise how long this has been going on, I developed a tummy problem (diagnosed with H Pylori) my head then felt too heavy for my neck and kept bobbing around then I started with crushing fatigue and pain and panic attacks that landed me in A&E a lot..excess Urination, sweats then the rapid weight loss in just weeks (2 stone) they said they tested my thyroid but all fine apparently, I'm going to get my records and see what they said from 12 years ago..it was like I was hyper then hypo if that makes sense? I will those links thanks so much for listening xx

[shaws in reply to Myonlysunshine]

I think you may not have had thyroid antibodies tested.

If you have them you'd have an Autoimmune Thyroid Disease (also called hashmoto's (hashi's) and the antibodies wax and wane. Sometimes being too much (we feel hyper) and at other times too low (hypo) and eventually the patient is hypo.

Dr Toft, ex President of the BTA states in a Pulse Article that if a patient has antibodies they should be prescribed levo (ignoring the TSH) as they will become hypo.

[Myonlysunshine in reply to shaws]

Hi Shaw's, he tested my antibodies and they were low but he said that that doesn't mean I haven't got Hashimotos based on my symptoms and history...x

[Emyloulou]

I also felt worse when I first started levothyroxine (my tsh was 147 when I was diagnosed) but it did start to get better after a few weeks. I’m no expert but I wasn’t increased until week 4 and then only up to 75mcg and then every 6-8 weeks until I got to were I am now.

[Myonlysunshine in reply to Emyloulou]

Hi Emma, how did you feel for the first few weeks if you mind me asking? As in symptoms? I know I've got to be patient but Im not sure whether it agrees with me and if I should change brand or another method or stick with it, I'm overwhelmed with it! X

[Emyloulou in reply to Emyloulou]

I just felt very unwell nothing specific. It was a bit like every symptom I’d had before but 10 times worse especially the fatigue. I suppose your body is going to be a bit shocked being given something it’s not had for a long time, a bit like me with chocolate really 😂

It will slowly get better but I did have a reaction to a couple of the brands of levothyroxine. I was advised find one that your happy with and make sure you only every accept that brand. The one I started with (mercurypharma) is the one I stick to.

Good luck x

[Myonlysunshine in reply to Emyloulou]

Thanks Emma that's a good description! I too feel like all my current symptoms are magnified..I'm on Teva which I hear isn't a great choice,.and my mother in law takes the same brand as you and is ok so Il ask about that thanks! X

[greygoose]

No, he was very wrong. He obviously knows nothing about thyroid and it's treatment.

If 50 mcg was too much for you, it might have been a good idea to lower it to 25 mcg, and then get your nutrients tested: vit D, vit B12, folate and ferritin. These can all be low when you're hypo, and affect the way your body uses thyroid hormone. Had you had those tested, and worked on supplementing those that were low, then you might have been able to tolerate the 50 mcg dose of levo, with an increase to 75 mcg six weeks later. Increments should only be 25 mcg at a time.

So, before you try levo again, get those tests done - and also antibody tests - put your results on here, with the ranges, and people will be able to help you increase your nutrients.

[Myonlysunshine in reply to greygoose]

Thanks greygoose..I should add I had all the nutrients tested bar Vit D which I already take Vit D3 2,000iu daily with Vit K2..my folate was low so he gave me folic acted 5mg, I had a B12 injection and my Ferritin was 8 and is always low so he gave me an iron injection which my gp never would (and ironically is now causing me huge pain where I had it injected in my bum and my hip is so sore now too 🙈!)

I've started gluten free 100% although I wasn't far off completely being GF..I was concerned when he increased Levo so quickly..but I went with his advice as I don't know any different.

I feel really disappointed because I've had little support from my own GP about trying Levothyroxine (I've booked a double appt this week for a last chance to tell them what I'm doing privately to see if they can help at all 🤞)

I was also wondering is I should order the salvia test for adrenal fatigue as that is something I've always been unsure about, I react badly to coming off steroids too and ended up in A&E after stopping a weeks dose for an asthma attack after our puppy setting my allergies off.

Ah what a mess! I feel such a pathetic mess I don't know what to do at all, my brain is beyond foggy and Ive lost confidence in everything and anyone professional feel like going back to my corner of the 'diagnosis' of M.E. and carry on as I was. I'm really sorry for being so negative I'm usually very positive but I'm not sure what I'm doing at all right now. Xx

[greygoose in reply to Myonlysunshine]

You've only had one vit B12 injection? Nothing else? You talking about your head bobbing around made me think of low B12. Mine did that before I started supplementing B12, and I was losing the use of my right arm! Both went back to normal on 5000 mcg daily of methylcobalamin. Just having one B12 injection - when? - is not going to sort out a B12 deficiency. For one thing, you should be taking a B complex to balance the Bs, and if you get one with 400 mcg methylfolate, that would be much better for you than the horrible folic acid you're taking.

And, how about the iron? One injection and that's it? Don't you need a maintenance dose? If you don't take a maintenance dose, it will probably drop again. These injections are not cures. They need to be maintained.

Doing the saliva cortisol test would be a very good idea. But, don't expect any help from your GP on that. They don't believe in the existence of adrenal fatigue - you either have Addison's, Cushing's or you're perfect! No shades of grey on their colour chart! But, there are things you could do yourself if you know there's a problem.

You may be in a bit of a mess at the moment, but you are not a pathetic mess! Don't think that. You, like so many of us, have been let down by the system, and left to cope on your own with not instructions on how to do it. You're not the one that went to medical school, your doctor is, and it is he who should be trying to sort the mess out! He's the failure, not you. Well, both your GPs, come to that! It's a dreadful situation, but none of it is your fault. We just have to try and find a way out, all of us together.

[Myonlysunshine in reply to greygoose]

Thanks grey goose 👍🏻

I did self inject last yet (b12) the methyl injections sub cut, i stopped god knows why..I will get back to weekly injections and sort myself out with a B complex too..so thanks

Ok so I need to find one with folic acid in?

The iron I don't absorb, i was on Ferrous Sulphate 3 times a day and was making me painfully constipated hence why I had the injection..what could I do otherwise? I have heavy periods and have just been (yesterday) booked in for an ablation on 23rd October which I'm hoping will help my iron levels..although the date might change as it's booked for local anaesthetic and I want General anaesthetic based on what I've read 😱🙈and that takes longer..

So should I go back on Levothyroxine 25mg (cut the 50mg in half) I'm wary of the private gp now and taking his advice and paying him more..

Hope you don't me mind asking all these questions, I really don't know who else to ask? Xx

[Myonlysunshine]

Sorry Grey goose I missed the end paragraphs, ok so sort the bloods again and try 25mg Levo...my antibodies were normal but he said that didn't mean anything as he was treating me based on symptoms and history ...?!

Not sure I should if I should be grateful for that! Would it be worth asking my gp for an ultrasound on my thyroid too? I get very hoarse and sometimes choke on food and swallow the wrong way (my mum had thyroid nodules removed) I remember it well as I was young and my dad said the peace and quiet was heaven, my poor mum!