Hello all, this may take a while to explain so sorry for boring anyone in advance.
Back in 2010 I started getting really fatigued and tired every day. It was making going to work really tough to the point I nearly had to quit but the docs said I just needed to sleep more.
Then in 2011 I was sat down eating a takeaway as happy as could be. It was my day off from work and I was watching a boxing match I had been looking forward to for months. Suddenly my heart goes all crazy out of nowhere and I am taken to hospital where they decide I have had a panic attack and that I would be OK after waking up the next morning.
Next morning comes and none of the physical symptoms have gone. My heart is pounding and missing beats, I am exhausted, I basically feel like I have gone ten round with Mike Tyson and have done to this day.
I would like to say at this point that nearly every person on my mums side of the family have thyroid problems. My last sister not to have it got diagnosed this week. They were all treated like they were crazy by their GPs for many years before finally getting diagnosed (like me).
I have had all the thyroid tests and they just say I am normal. I wore a holter monitor for 24 hours that confirms I have a significant amount of ectopics. I did have anxiety for a while over that but now have no anxiety at all but still the symptoms persist. I developed depression after about one year of fighting these symptoms 24/7. I have quite a few of the symptoms listed when you look up thyroid problems.
Another thing that may be significant is that out of all the hundreds of tests the only 2 things that showed up was that I am very low on folic acid and vitamin D. I was reading up on thyroid problems today and apparently this can be linked to thyroid problems which completely makes sense.
I also developed tinnitus for no reason whatsoever and have had that a couple of years now. Part of me thinks this too may be related directly or indirectly through any anxiety caused by a thyroid problem.
The problem I am having is that any GP I talk to just throws antidepressants at me and I must have tried 9 different ones for months on end and none of them are working. Even a psychiatrist gave up trying to medicate me as he couldn't get rid of the symptoms. The symptoms are 24/7 and I feel really unwell. I am 33 years old and feel like I am 100.
If I try to talk about my family history of thyroid problems and how my symptoms match then they just either go on an ego trip where they refuse to even contemplate the idea of a patient suggesting a treatment or they say it is all in my mind. The latter really annoys me as I had never even been to a doctor for about 9 years before this happened as was always healthy. I am not the type of person to waste a doctors time unless it is serious.
I did read that there are some docs out there that treat on symptoms and not just the TSH test and tried to get referred to one but no GP would do it for me. I feel so lost as I have basically lost 4 years of my life and every day is just a battle to reach bed time.
Do you guys think I may have a thyroid problem? Is there any sure fire way I can get it diagnosed if I do have it? I would happily pay my life savings just to feel normal again. My entire life has been ruined by this and I really don't need another 4 years of this let alone decades.
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Deano82
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Hi and Welcome ! I so want to reply to your post - however I live in Crete and we are two hours ahead - so it is my sleepy time Click onto my name so you can read my profile - the edited version - so when I do reply you will understand the difficulties many of us face with diagnosis/treatment....
Lots of very clever and helpful people will be along whilst I am in the land of nod....speak soon
Most of my family have thyroid issues and I wasn't treated for several years (which I feel were completely lost years) so I really understand where you're coming from. Things I would suggest:
Demand your medical records for the past 4 years and make sure you get the levels for Tsh, ft4 and ft3 and reference ranges for same. Plus results for vitamins etc
Go onto the thyroid UK site and get tested for the DI102 gene defect plus get your ft3, ft4 and tsh levels checked
Post your results (numbers and reference ranges on here) Together with levels and ask for advice
If you have the DI102 variant and low ft4 and ft3 buy NDT on the Internet. I can't dm you a source as I do get it on prescription But others on here can. I regret the years it took me to get diagnosed especially as I could get treated without a doctor but don't treat without checking levels first plus getting some dosage recommendation as you can suffer severe side effects if you don't slowly increase your meds
I could have written this! It is exactly my story too! I am low in vit d even after taking a really good vit d spray supplement. do you have any blood results? I have just got all of mine since 2008 to the present day at the cost of £29 but worth it to take control. Some wonderful advice and support on here. I have made a private appointment with an endocronologist as I can't take anymore. I am at the point where I can't get to work so like you I don't care about the cost. Good luck.
I have just paid £220 to go and have these tests done private as the NHS GPs don't listen to me anymore. Please let me know if there is anything else I need to get done.
1 piece(s) Thyroid Stimulating Hormone blood test
1 piece(s) Free T3 blood test
1 piece(s) Free T4 blood test
1 piece(s) Thyroid peroxidase Antibodies blood test
1 piece(s) Vitamin D (25 Hydroxy) blood test
1 piece(s) Vitamin B12 blood test
1 piece(s) Ferritin blood test
1 piece(s) Folate blood test
1 piece(s) Zinc blood test
1 piece(s) Selenium blood test
1 piece(s) Magnesium blood test
I am sure I could get the test results from when they initially found me to have low folic acid and vit D. They gave me 30 folic acid tabs which I took and some vit D tabs which gave me an allergic reaction so the gp said stop taking them and offered nothing else.
Thank you for all the comments so far. It is nice to know I am not the only one going through this. My life has been ruined by this so far to the point all my friends disowned me as did my long term girlfriend. I am housebound most days now as the company I worked for made me redundant because of it even though I only had 1 day off in two years which was an absolute struggle for me and I was only able to do it because my job involved sitting down (static security guard).
Just walking to the kitchen and back is hard enough these days and I look in good shape. I used to play for many sports teams and also used to be very unfit before that so I know the difference between just being very unfit and not being at all well which I try to explain to the GPs and they don't listen.
Anyway fingers crossed this picks something up this time. It will be about the 5th time in 4 years I have had a test but this one contains more than the others I took.
It will be money well spent and everyone here will help you in your quest for wellness. You have chosen a good set of tests. Sadly blood test results are only as good as the person interpreting them - hence why we are told so often that we are 'normal ' when they mean - within the range. Sadly where we are in the range is so important for those of us with thyroid or other auto-immune issues. For example B12 needs to be near the top of the range and so on....
Try to obtain your earlier results from your GP as you are entitled to have them - a legal right detailed on the main Thyroid UK website. It is good to start monitoring your progress for yourself. Sadly as you already know we have to make the changes and take control for ourselves.
Keep posting and asking questions - there is always someone here to help......
Just one thing, Deano, in that excellent list of tests - there are two antibody tests : the TPOab, which you have ordered, and the Tgab, which you haven't. If you have either - or both - elevated, then you have Hashimoto's Disease. Some people have one, some have the other, but they are both indicative of Hashi's.
And it might be best to add selenium and iodine, just to cover all bases. And if all that fails, we'll think of something else!
Pernicious Anaemia. Check it out before going the next step to thyroid hormones. Blood levels of B12 indicate you may be fine, but cellular levels aren't measured and that's where it counts.
Deano82-You've come to the right place!This is an absolutely unique resource.You are no longer alone with this.You never have to apologise for writing posts.There have been periods when I have not been able to cope with taking responsibility for getting well as quickly as I would have liked,due to being overwhelmed by mental fatigue,anxiety & depression.I take a break & come back & get the help & support I need with the next step.Just about to try T3 after years of doctors refusing to believe my problems could be anything to do with my underactive thyroid,as my blood results are normal according to the NHS.
Keep coming back!There is hope-with the help of the experience,strength & knowledge of the fellow-travellers on this site.
Dean, hypothyroid symptoms can build slowly and insidiously for years prior to bloods becoming abnormal. The reference ranges used to determine a diagnosis are far too broad and many patients are very symptomactic despite their bloods being within the normal range.
You've ordered the correct tests. Do them early in the morning and before breakfast when TSH is highest. Post the results with the lab ref ranges (figures in brackets after results) in a new question and members will advise.
If you can't tolerate vitD3 softgel capsules you could try vitD3 mouth sprays which are very effective.
Im a little surprised that your gp wont Give you blood test or refer you... I didnt think that they could refuse to do that... Honestly, nothing ceases to amaze me on this forum... I would say change gp pronto, they sound awful... We all have our struggles with gps and diagnoses but i would have thought getting referrals and blood tests was a basic element of care! Dont forget to put your results on here because there are a lot of people who can interpret them for you... Nhs ranges can be a little far reaching... I would also add that anxiety and depression can result from an undermedicated thyroid problem as well.
Hi Deano82, Im sorry I cant offer you advise regarding your health, but you have certainly come to the right forum, there are so many knowledgeable people on here that can help you when you have posted your results. We all have a similar story to yours, the advise I have been given has given me back a better life than I had for 17 horrible years. Good luck, keep asking.! Bev.
I'm new to this forum and found that it offers a wealth of information and help, hopefully you will benefit from it too. I know what a nightmare it can be dealing with GP's / Doctors who just dismiss your health concerns or tell you 'not to worry about it', so the best thing you can do for yourself is take your health into your own hands and find out as much as you possibly can about your condition to make an informed choice about how you wish to proceed next.
I recently undertook (privately) 8 Thyroid blood tests through Genova Diagnostics (gdx.net/uk) called Thyroid Plus (END 27) blood tests and quoted Thyroid UK as the medical practitioner because it wasn't coming through my GP or the NHS. The tests cost £141.00 and it will give you a full thyroid screening (including both thyroid anti-bodies tests and reverse T3 tests).
I hope this info may be of use to you and you find the information you need to help your health.
Thank you everyone you have all been most helpful. I have decided enough is enough after 4 years of hell and will not be fobbed off anymore. Even if it turns out my thyroid is fine there MUST be something wrong with me as I have never felt this ill in my life. I will update you all when I have the results.
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Click onto my name so you can read my profile - the edited version - so when I do reply you will understand the difficulties many of us face with diagnosis/treatment....
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