Diagnosed with M.E 10 years ago, here are my thyroid results... Help!

[CharlieHJ]

Im new here so will try and give you a brief overview of the last 10 years. I was 17 when I suddenly became very unwell. After 6 months of sleeping 18 hours a day I saw an endocrinologist who ran a couple of tests and diagnosed me with M.E/CFS. At that point the ‘help’ I was given was that some people magically recover and some people, well, don't. Because of the way I had been treated by doctors and that fact that my boyfriend at the time and told me that I was ‘doing this to myself’ I began to believe that maybe this was all in my head. Therefore my tactic was to behave as though I did not have M.E, I would not associate myself at all with sickness, I was going to think my way out of this situation with sheer force of will.

Strangely, that didn't work. After struggling for many years I had a huge crash 4 months before my wedding and got myself into a right state because, as much as I wanted to marry my husband, I loved him too much to see him hitch his wagon to a 3 legged horse! I felt broken and useless, I couldn't imagine being able to have let alone care for children and i didn't want my husband to have to be my carer. This is when I began my recovery with the Optimum Health Clinic and since then I have made huge improvements. Their philosophy centres around tapping into the bodies innate ability to heal utilising nutrition, psychology and spirituality. In the past 3 1/2 years I have had periods where I'm bursting with vibrant energy, totally symptom free but I've always struggled to maintain it and tend to crash every few months.

2 years ago a blood panel that my nutritionist had requested showed that I had very low B12 and my NHS GP have me a loading dose... WOW I felt incredible and it lasted for a couple of months but then my energy began to dip again. I waited for my top up thinking that would get me back on track but it did nothing. After many upsetting, exhausting, frustrating GP visits trying to get more regular B12 injections I went private, asked for b12 injected and was given a precription! I have been self injecting 1mg of hydroxocobalamin weekly for a year now.

Last September I went back to Uni but dropped out in March after crashing. I think this crash was a combination of my poor ability to handle stress but also I had relaxed on my regime as I had this pervasive thought that maybe this whole time I was just b12 deficient and now that I have the injections I don't have to be so ‘on it’ with my diet, meditation, yoga etc. After that crash I began the ketogenic diet as I had read some research that demonstrated that people with M.E often struggle to metabolise carbs efficiently and began to feel strong and healthy again. I began to slowly exercise and got a part time job. One day I was listening to a pod cast with Dr. Izabella Wentz and recognised all the symptoms she listed, it got me thinking and since being given my diagnosis 10 years ago no one has ever investigated anything since, they haven't even investigate my M.E diagnosis.

On the 10/07/17 I saw my private GP for a repeat prescription and mentioned thyroid to him. He told me that most of his M.E patience want their thyroid looking at but that it rarely comes back with anything abnormal. these were my results:

Free T4 13.7 pmol/L 11.0 - 26.0

TSH 0.99 uU/mL0.35 - 4.50

Free T34.1 pmol/L3.9 - 6.8

At the end of June I crashed really badly and have been in bed ever since. this is the worst crash I've had since starting my recovery and it’s really thrown me through a loop. All the things that are usually effective at getting me going again don't seem to be working and I feel overwhelmed with the task of trying to heal my body. a couple of weeks ago I sent a blood sample to Genova to get a comprehensive look at my thyroid (I stopped taking all supplements for a week beforehand and fasted before my 9am appt). I know that a thyroid diagnosis is just the start of a whole other battle but I was hoping that my blood would show something that I could take to a doctor and say HA, see, something is wrong please can you actually investigate what the heck is going on to make me feel so effing awlful. So when these lasted bloods came back ‘normal’ i felt really frustrated I just don't know where else to look, what else I can do?! Please could anyone interpret them for me and/or suggest anything else I should get tested for. Sorry for the long post but thank you for reading this far

[Marz]

Sorry to read of your struggle ......

Sadly the anti-bodies were not tested to rule out Hashimotos - TPO & Tg

😊

[CharlieHJ in reply to Marz]

Oh I'm confused, I thought my Genova test shows no antibodies?

Thank you for responding

[Marz in reply to CharlieHJ]

Ooops sorry - went by the results in your thread. Cannot see your results on my phone .... will go to PC later 😊

[greygoose in reply to CharlieHJ]

Your antibodies are negative - this time! But, antibodies fluctuate, and one negative test is not enough to rule out Hashi's. And, what you've described sounds very much like Hashi's.

I think I would have laughed in your doctor's face when he said that all his ME patients wanted their thyroids tested. Of course they did! And he should have tested them before giving the 'diagnosis' of ME! It's a dustbin diagnosis that doctors hand out when they have no idea what's wrong with their patient. They can then consign that patient to the dustbin and just ignore them, telling them that whatever they complain of, it's due to their ME! As you've noticed, nobody bothers any further with you once you've been given that label. No more searching, everything's down to your ME. However, so many ME patients find they get better when treated for low thyroid.

Your levels of TSH and thyroid hormone, whilst not perfect, don't really scream hypo, at the moment. But, they could have been lower in the past - when you crashed. With Hashi's, levels tend to fluctuate. And, if they've been low, then you possibly have low nutrients other than B12. Have you had your folate, ferritin and folate tested? If not, it would be a good idea.

As you're self-injecting with B12, do you also take a B complex? You need to do that because the Bs all work together, and need to be kept balanced. You might find your B12 injections have more effect if you also take the B complex.

[shaws Administrator]

Although your TSH would not get you diagnosed as it is low, both your FT4 and FT3 are too low. Both should be towards the upper part of the range.

Did you have your blood test at the very earliest possible, fasting?

This is from Thyroiduk.org.uk website and you will see that if FT4 and FT3 are low you should have been diagnosed as hypothyroid.

thyroiduk.org.uk/tuk/testin...

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

Blood tests have to be at the very earliest, fasting (you can drink water) and if you take thyroid hormone replacements you'd allow a gap of 24 hours between last dose and test and take afterwards.

[eeng]

Your FT3 and FT4 are both quite low. Once you get your nutrients tested, if your doctor doesn't seem interested, you could try a low dose NDT (Natural dessicated thyroid) support - something like Thyro Gold, which is marketed as a food supplement or something, and has quite low levels of T3 and T4 in it. That should raise your hormone levels, and if you feel better then you have gained something, if not you can just stop taking it. Taking NDT will tend to make your TSH fall, and doctors don't like it falling below the range (even if it makes us feel better!), but since your doctor will probably have decided your thyroid is perfectly healthy the chances of you having your TSH tested again are low.