Feel like giving up

[ZM1980]

Hi all, would really appreciate some input/advice.

I have so many ongoing, chronic, worsening symptoms that are really having a significant impact on my ability to lead a somewhat 'normal' life - chronic reflux and stomach issues, lower digestive issues, gynae issues/fibroid, joint stiffness and mild pain (neck, back, elbows, wrists, knee, feet), a feeling that my bones are generally getting weaker, chronic dry eyes, premature mild to moderate hearing loss and tinnitus, changes in sense of smell - also feeling sensitive to cold and heat, feeling very cold if I'm inactive, (even for a short while), fatigue/feeling drained on a daily basis, even with sufficient sleep.

I've had a lot of these symptoms for over 10 years (even some before that), but things have worsened recently, mainly the digestive and joint issues. I've had quite a few tests and scans over the years - Gastroscopy, Colonoscopy, Barium Swallow, MRI Auditory Meatus, MRI pelvic, pelvic ultrasound, abdominal ultrasound, MRI cervical spine, Cardiac MRI, ECGs, stress echo, repeated blood tests. I do have cervical spondylosis (mild), joint hypermobility, mild to moderate hearing loss, dry eyes/blocked meibomian glands and past gastroscopy revealed gastritis and erosions - but apparently most recent was normal - apart from mild reflux changes (Oesophageal biopsy). I have a single uterine fibroid and have had benign colon polyps removed in the past. I have possible Microvascular angina, but not definitive diagnosis.

Blood tests - only abnormalities are a persistently higher than average ESR, slightly raised CRP and most recent tests showed slightly low platelets and Mean Cell Haemoglobin level. Iron levels usually at the lower end of normal, despite taking supplements.

I've done quite a lot of research into my symptoms, trying to piece things together and have looked into how to treat these issues myself. I came to the conclusion that the hypermobility could be responsible for some of the symptoms, but can't be certain. Hormones could be playing a part too, as I did have slightly low LH and FSH previously. I take vitamin D 4000iu, Iron, vitamin B complex, zinc piccolinate, omega 3, 6,9, but not sure how much these benefit me in terms of improving physical health issues.

Given all the tests I've had, are there any further relevant tests I should look into or anything specific I should pester my GP about?

I know this is quite long, so thanks for reading!

[Batty1]

sorry you have been through a lot. Have you ever had a complete thyroid blood test along with thyroid antibodies? If you haven’t you could pop over to thyroid forum here and read up on proper testing protocol for thyroid …. If you did do thyroid test can you post the results with ranges?

Please don’t give up you just need to look for other reasons for your issues thyroid is a good place to start but most doctors won’t bother.

[ZM1980 in reply to Batty1]

Hi and thank you for the advice and encouragement. I have had Thyroid blood tests in the past (TFT), but results have always come back within 'normal' range (although I'm aware that doesn't always mean the thyroid is functioning how it should), but I know it would take a lot of convincing GPs otherwise! I think I also had more extensive tests - for FT3 and Antibodies, years ago, but I'll need to check with my GP.

I spoke with my GP last week and asked for some blood tests and he included basic thyroid test on the form, so will post the results.

[Swissgirl]

Dear ZM1980. I am very sorry to hear that your health is so challenging and you are feeling so unwell. As Batty1 says, first thing I would also recommend is a full thyroid panel as well as testing of essential nutrients. Under functioning thyroid issues ( hypothyroidism/ Hashimotos ( autoimmune thyroiditis) could explain many of your symptoms.

I have Hashimotos ( autoimmune thyroid disease) which causes hypothyroidism ( under functioning) as well as chronic fatigue syndrome, fibromyalgia and mast cell activation syndrome. Many of the symptoms you describe are similar to mine. One of the worst for me are the digestive issues,food intolerances, chronic fatigue, chronic pain ( joint, muscle, neuropathy)..

I would start by having an extensive blood test vía your GP for ferritin, a full iron panel, vitamin B12, vitamin D and folate. Also very importantly, have you had your thyroid function tested ever? This would be fT3, fT4, TSH and antibodies ( TPO and TgAb). Many of your symptoms could be explained by low thyroid function. If your GP refuses to do any or all of tests, I would join the healthunlocked thyroid UK forum. It is brilliant with wonderful, knowledgeable and sympathetic members who are so willing to help ( about 125’000 members!). There they can tell you how to get private and not too expensive at home testing fir everything I mentioned, and how to do it correctly.

How is your diet? Are you vegan/ vegetarian? Gluten free? Do you take any supplements? 

Has the joint hyper mobility been formally diagnosed? My sister has Ehler Danlos Syndrome and there is a cross over with MCAS ( approx 1/3 patients have both) and many MCAS patients have autoimmune thyroid disease! Just something to think about and research.

Hope that helps and you feel heard.All the best. 🌸

[Swissgirl in reply to Swissgirl]

just found this info on thyroid uk for private testing:

thyroiduk.org/help-and-supp...

[ZM1980]

Hi Swissgirl, thank you for all the advice and info. I had been thinking about Thyroid issues as a cause of some of my symptoms, but as results from previous tests have always been in 'normal' range, I sort of put it to the back of my mind. Those were the basic tests, but I think I might have had more extensive tests years ago (will need to double check with my GP). Will be having a blood test next week (which again includes basic Thyroid test), so will post results here and on the Thyroid forum (I actually follow the forum, members are very knowledgeable!)

Sorry that you have to deal with your health conditions, it can be difficult to manage at times. Like you, I have a lot of ongoing digestive issues and it does feel that some symptoms could be caused by food intolerances - I recently discovered I have one of the genes that can increase the risk of developing coeliac disease, so I asked my GP for a blood test (but not sure if more extensive blood tests would be needed). May I ask how you were diagnosed with MCAS? Was it through blood tests?

My diet isn't too bad - I don't eat any red meat or fish, only chicken and I do try to have fruit and vegetables on a daily basis (sometimes difficult with the digestive issues), but I do have higher calorie/sugary foods quite often - I tend to crave them, as my energy levels are usually quite low - but I try not to have too much.

I take supplements - vitamin B complex, Vitamin D 4000iu, Iron, Zinc, Omega 3,6,9. Last blood test, vitamin D and B levels were fairly good, but my iron and calcium levels are usually at the lower end of normal. I did mention to my GP that I feel I have a bit of a problem with absorbing vitamins, as vitamin D has been at the lower end of normal in the past, despite taking supplements.

My hypermobility was diagnosed by a Rheumatologist back in 2015, then again by a physiotherapist a few months ago. I hadn't heard of Ehlers Danlos syndrome back then, but only looked into it more recently - it does seem a lot of my health issues fit with Hypermobility EDS. Was your sister diagnosed with EDS by a Rheumatologist?

I'm definitely going to look into things a bit more - Thyroid and EDS.

All the best to you too! Take care

[Lovelybunnies]

I am over 7,000 in medical debt 😅 I have been diagnosed finally with fibromyalgia in which some doctors laugh at me and it hurts😕 the day to day the fact that NOONE understands and can relate and how I look “fine” “normal” “healthy” is just disgusting to me when I have been for 3 years now trying to get to the bottom of this awfulness

I literally cried when I found out that I didn’t have lymphoma 🫠😩 I was so broken because it meant that I wasn’t done in my journey that I was still a medical mystery and a hypochondriac to some . This road is not easy and so many people don’t understand and it hurts physically emotionally and mentally 🥺 but this is why I am here to get supportive help and courage from people who might actually understand!

Best of luck 🤞 💕☕️

[ZM1980 in reply to Lovelybunnies]

Hi, sounds like you went through a lot trying to get a diagnosis. Certain conditions can overlap with others and it can be so frustrating when you have chronic symptoms and those around you disbelieve you because you look 'well' - the amount of times I've been told 'you're looking well' by people I know - if only they knew what was going on underneath the surface! Some medical professionals can be the worst at understanding this, especially if all your blood test results are always in 'normal' range - sometimes it takes a lot of research and convincing doctors to take further action.

I'm glad to hear you finally got a diagnosis, so you can get the support you need. There are a lot of supportive communities on here with members with a wealth of knowledge!

All the best to you too 🙂 💕