What should I do?

Hi everyone,

I'm new here. I'm a 34 year old female, diagnosed with ME/CFS 7 years ago, and shortly after (following much insisting) tested for and diagnosed with Hashimotos. My GP reluctantly allowed me to start taking thyroxine (my levels were within normal range at the time but I felt awful) and I've been stable now (results-wise) on 100mg a day since then although still far from well.

I saw some improvement to my symptoms for a few years but since having my baby last year things have really gone downhill and I'm struggling to cope with daily life. My baby is looked after by other people for 3 days a week, I get help for 2 days so I'm only on my own with her for 2 days but I'm finding that a real stretch. I'm in bed by 9pm every night and struggle to get out and do normal things at the weekend etc.

My main symptoms are extreme fatigue, muscle weakness (climbing the stairs, lifting the baby etc difficult to do), dry skin, sore throats (off and on), brain fog, headaches, constipation, general lethargy and malaise. I love being a mum and Im not depressed, just desperate for a bit more energy so I can live my life rather than just get through each day!

My latest set of bloods, taken a couple of weeks ago, were yet again 'normal' and the GP, although sympathetic doesn't have any more ideas of what might help and won't refer me to and endo when my results are ok. Here they are:

TSH - 1.3

FT4 - 18.7

Serum prolactin - 216

I asked for FT3 and my GP wrote on the form to ask the lab to do it even if TSH was normal but they didn't do it. I also asked if the antibody test could be done again as I don't have my previous result but apparently they only do that on diagnosis.

In terms of my diet, I've been low carb, eating loads of veg and veggie protein, and avoiding wheat, gluten, dairy, sugar for 3 months now. I'm also vegetarian so finding this quite restrictive, and feeling disheartened that it's made no difference to my symptoms.

I'm taking ubiquitol (co-enzyme Q10), niacinimide, d-ribose, fish oil, acetyl-l-carnitine and a multivit. I've also started taking a liquid iron supplement as my iron levels are on the low side of normal.

What should I do now? Is it worth going private? How do I decide who to see? Should I keep up with the diet even though I feel it's not doing anything?

Sorry for the long post! Thank you very much for reading and I would really appreciate any advice you might be able to offer.

Laura

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7 Replies

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  • Hi Laura welcome to the forum. Getting a diagnosis of CFS and hypo is certainly not the easy way to go! This was also my experience but rather than children I was at the 'it must be menopause' stage. If I could do it all again I would have self medicated when I was first in the subclinical category rather than waiting two years with dreadful symptoms before they even considered retesting. So much of our treatment seems to be wait and see.

    But we are all different and will have varying root causes and triggers. So my advice would be read everything you can get hold of and make sure you understand your options. Initially it can seem too much and very isolating but that really is the best start. You appear to have discovered Dr Myhill who really was a ray of light for me. Happy to talk more as private message. You are not alone. BTW you will get detailed replies re testing but why does your GP think that TSH of above 1 is normal? It goes against all guidance as we should have suppressed TSH, at least below 1.

  • Thank you very much for your response cwill. I am indeed aware of Dr Myhill and try to follow her protocol as closely as I can. I've just ordered her new book so look forward to seeing if that can shed any more light on things.

    Am interested to learn a bit more about self-medicating. Will PM you.

    Re:TSH result - apparently it's within the normal range. That's all I know for now. Am due to see my GP again in a couple of weeks so will ask her more then.

  • I'm a 34 year old female, diagnosed with ME/CFS 7 years ago, and shortly after (following much insisting) tested for and diagnosed with Hashimotos.

    Since a diagnosis of ME/CFS is one of exclusion your GP did things in the wrong order.

    He should have tested you for thyroid dysfunction and thyroid antibodies before diagnosing you with ME/CFS, not after. I've no doubt there were probably lots of other things that should have been tested before diagnosing ME/CFS too. For example, sex hormone levels? nutrient levels? Did your doctor test any of those?

    But ME/CFS is a lovely diagnosis for the medical profession. Once they've labelled the patient with that they never need to treat them for anything ever again. All they have to say is "it's a symptom of your ME/CFS and there is no treatment for that" and then they send the patient away to continue suffering.

    I read an anecdote from one ME/CFS patient on another forum that they went to A&E with a broken rib protruding through their chest wall. The doctor flatly refused to look at it because they had ME/CFS. I just wish the person this happened to had given what the eventual outcome of that anecdote was. I hope he/she took the doctor to the cleaners and he was struck off.

  • Hi humanbean, thank you for your reply. My GP did a full blood count and I've had my sex hormones tested too, but everything always comes back 'normal'.

    Totally agree a diagnosis of ME/CFS is like being written off. So frustrating!

  • Laelow,

    TSH and FT4 are within normal range but there is scope for an increase in dose to see whether symptoms improve. Read Treatment Options in thyroiduk.org.uk/tuk/about_... Email louise.roberts@thyroiduk.org.uk if you would like a copy of the Pulse article to show your GP.

    Low/deficient ferritin, vitamin D, B12 and folate are common in hypothyroid patients so ask your GP to test. Vegetarian diet can cause suboptimal B12 levels so you may need to supplement. If you are not feeling any better after eliminating wheat etc. introduce them one by one at 2 weekly intervals so if anything does cause an adverse effect you'll know which it is.

    The BTA Statement on the Management of Primary Hypothyroidism lists a number of non-thyroidal reasons why patients may experience persistant symptoms when adequately dosed on Levothyroxine.

    onlinelibrary.wiley.com/doi...

  • Thanks for the info Clutter, the BTA statement is useful.

    I had B12 injections for a while (privately, as my blood results were 'normal') but Dr Myhill suggested higher levels might make me feel better. It made very little difference.

  • Just been to see my GP who has reluctantly agreed to increase my dose from 100mg to 125mg. She scared me a bit by saying it was against her advice as my results were perfect - 'right in the middle' and I was putting myself in danger of thyroid toxicity (this might not be the right term, I forget - but she meant going hyper due to my TSH being too low and T4 too high).

    Any thoughts most welcome!

    Thanks.

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