Not Fibromyalgia: Not CFS

[chookey]

I haven't visited here for some time. Following major surgery for head and neck cancer I developed terrible fatigue which included a ton of symptoms. Covid was rife and no appointments were possible with a GP. Not much better now either.

I was in a real state both physically and mentally so emailed my surgery with a 2 page letter. This resulted in me being referred to the rheumatology dept. of my local Hospital. After 11 months of hearing nothing I contacted PALS to ask if they could investigate.

Fair play to them they responded very quickly and told me that they had contacted my GP 10 months ago to inform them that they believed I should be seen by Endocrinology instead. I contacted my GP with this information, no apology but they acted on it.

It took the Endocrinology team nearly 2 years to give me a face to face appointment. I'd had 3 telephone appointments in that time. My TSH levels were wrong and my medication has been raised from 25mg to 50 and now to 100mg.

I am still occasionally dropping into a semi-coma for a few hours, suffering extreme flu-like symptoms, heavy tinnitus, can't get warm, etc; etc; Get's so bad mentally I've even been googling assisted dying. As soon as my symptoms ease my mental mood returns to normal and I can feel quite happy.

Are they wrong in my diagnosis?? Has anyone else on here been down this same route??

Congratulations if you've read this far.

[gemimafibro]

Hello Chooky.

Firstly, I am sorry that you are going through this.

I'm sorry I don't have much advice. It took me 7 years to get a diagnosis, and getting passed from one department to another so I understand your frustration a little. All the waiting to see someone, when you feel like your life is slipping away from you, is exasperating. I too felt like giving up many times, I do still have the thought from time to time. I have awoken from sleep before and cried that I had done.

My Fibromyalgia was seemingly set off by a car accident and my grandmother dying in the same month. The physical and emotional trauma were the triggers for me. So it wouldn't be surprising if your battle with cancer could potentially be a trigger. However, there are many conditions like Fibromyalgia that have similar symptoms so I will not say "yes, it is or yes, it sounds like it is Fibromyalgia" because I do not know and I am not qualified to do so.

I know you're tired. I know you are in pain and I know you feel helpless. But keep going. If you have to be, be a nuisance, advocate for yourself with your GP and the hospital. Write a complaint to your hospital if needs be, detailing exactly how your condition is affecting you and your life and that the quality of care you are receiving is poor.

Your life matters. Your quality of life matters. It doesn't feel that way to you right now, but it does.

Gemima

[Yassytina FMA UK Volunteer]

Hello, I am sorry too read this , so much time you waited for help, I agree with Gemima your quality of life matters and I would push too be seen by a doctor who needs too know right now how you are feeling, don’t be fobbed off, I actually took myself too my surgery once as I was so low , the receptionist got me seen , I needed too be heard and someone too listen, you ve had a lot going on , I really hope you get the right help very soon .Yassytina

[TeeDee63]

Hi Chookey, I’m so very sorry to hear of your struggles. Having both fibromyalgia ( following breast cancer surgery etc) and underactive thyroid, I really think you’d benefit from joining the Thyroid arm of healthunlocked. A lot of your symptoms are very similar to underactive thyroid, meaning you may well be under medicated. I learnt so much from the wonderful members on the thyroid forum that I was able to advocate much more to my benefit with the health professionals who sadly do not understand how being under medicated affects us. Please join the forum and copy and paste your question there. You will be asked for recent TSH ft3 and ft4 numbers aswell as vitamins such as b12, ferritin, vitamin d etc in order to gain a better understanding and how best to advise you. I really hope you can get some resolution soon. Best wishes, Tina.

[bookish]

Sorry that you are having such a rough time. Surgery to head and neck is very likely to have affected thyroid function even if it wasn't involved directly in the surgery. Temporary lack of blood flow to pituitary can throw signalling into chaos, so I'm glad you have an endo on board but would agree that joining the thyroid HU group might be helpful for you. Your levels still may not be good enough and you may be low in cofactors to help with conversion. Any stress on the body, never mind cancer, surgery and anaesthesia, will affect essential vitamins and minerals. Vit B12 (indeed all the Bs), magnesium, Vit D, Vit C, are especially stress-depleted and all could be contributing to your symptoms. Important especially with B12 to get testing done before supplementing as supplements (of B12 or B9 - folate/folic) may obscure signs in blood that doctors can use to identify a deficiency (and it is a commonly missed one anyway, as blood indicators and serum test results can be misleading). Best wishes

[Sparklingsunshine]

I'm so sorry you've been through such a rough time. I have underactive thyroid, diagnosed 3.5 years ago, as well as Ehlers Danlos and Fibro. Can I suggest you consider joining the Health Unlocked Thyroid forum.

Its extremely informative, with a wealth of experience and advice. As a man its very possible you are still undermedicated, and that could be making you feel so ill. There's a rough guide to Levothyroxine dosing, 1.6mcgs of Levo per kilogram of body weight. So find out your weight in kilos and times it by 1.6.

Its not set in stone, we all have different dosaging needs but it might give you some idea whether you still need further increases of Levo. Also hypos like us often have low levels of iron, folate, vitamin D and B12, all which can make you feel awful. As I said though I strongly suggest you join us over on the thyroid forum.

[chookey]

First of all, thank you all for your replies. I never realised there was a thyroid forum on here. I will stick my nose in and have a look.

Think I'll be back here again though. If it were an underactive thyroid only causing these symptoms then surely I would have seen some improvement in this time. I had an awful 10 day stay in Hospital which I feel traumatised me and could well have triggered some of what I'm going through now.

[Sparklingsunshine in reply to chookey]

You say underactive thyroid only, but the thyroid is responsible for so many bodily functions and there are around 300 symptoms associated with a misbehaving thyroid gland, so dont underestimate how yuck you can feel if you aren't optimally medicated. If it was as simple as just taking Levo every day and hey presto you're feeling great, then the HU Thyroid forum wouldn't be the busiest one.

[klr31]

Get your thyroid blood test results and post them on the thyroid site on Health Unlocked. It sounds like you are not optimally medicated.

Karen