Do not know what to do..

[lownook]

Hi I’m new here and have not been tested or diagnosed with any thyroid issues… I’ve had a collection of health diagnosis over my 56 years due to ongoing pain, fatigue, exhaustion etc.(tried to explain it all but the post got way too long and complicated!) So long story short, after ankle knee, hip and back pain, I eventually broke my ankle, back scan showed pre cursor to a by lateral stress fracture in my back with moderate oedema, reduced hydration in my back and neck also.. back specialist does not know why as I am not an elite sports person! Rheumatologist initially after examining me suggested rheumatoid arthritis , raynaurds, possible Lupus (biopsy diagnosed discoid lupus years ago) but my blood tests are all within range and show no inflammation and Dexa scan say bones are within normal range. So nothing wrong other than primary raynauds and fibromyalgia (diagnosed 12 years ago) he does not plan on seeing me again. This does not help or get rid of the pain etc. I’ve been taking statins for the last 3 years due to high cholesterol so did some research and found that as well as lowering your LDL, statins also lower your CReactive protein, which is apparently an inflammation marker. Mine is now 0.9 ( 0.2 - 4.9) So could this be why my blood tests show no inflammation?NHS website also states my thyroid and T 3 should have been tested before being put on statins, but it wasn’t. All the autoimmune diseases seem to have a lot of similar symptoms so I do not know what to do now….My inorganic phosphate, globulin and eGFR-EPI creatinine are all lower than the stated ranges, if that means anything. I’ve got to the stage that I cannot keep trying to get help from doctors, I get too anxious and stressed and I’m too exhausted and dare I say embarrassed to keep going back. So I have come off all supplements and statins and will have a full thyroid test done at one of the recommended companies on here but I do not know how long to wait until all the statins that may effect the results will be out of my system? Also has anyone any experience of these problems with thyroid disease?

Many thanks for any help

[SlowDragon Administrator]

Statins shouldn’t affect thyroid results

Perhaps wait 4-6 weeks

Only do private testing early Monday or Tuesday, ideally before 9am

Are you currently taking any vitamin supplements?

You need thyroid, including thyroid antibodies plus vitamin levels tested

Medichecks is usually the cheapest

List of private testing options and money off codes

thyroiduk.org/getting-a-dia...

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins by DIY fingerprick test

bluehorizonbloodtests.co.uk...

[lownook in reply to SlowDragon]

Thank you for your reply

I am not sure if I am over thinking this.. but my thoughts are if cholesterol is high because T3 is not clearing cholesterol from the blood… if I don’t wait for the statins to stop clearing my cholesterol, the test results will show low cholesterol levels and they will be interpreted as my t3 is ok… my cholesterol would still be low due to statins not t3.. does that make sense?

I was taking vitamin D3, B12 and magnesium, no blood tests results from December 21 and January 22 seem to have tested these or the others you have listed. I’ve stopped them all as well as the statins because I’ve read these will be low when Hashimoto is an issue. I wonder if my doctors are missing this..doctor said too much d3 could be the reason for my bone issues and pain..

I did have lots of bloods taken by the rheumatologist but when I asked for a copy, his secretary says he does not give them out but she will ask him. She was very nice and asked me to email everything, including about the statins and whether they are affecting my blood results. I’ve had no reply and no results as yet..

That’s why I’m stuck…

[SlowDragon Administrator in reply to lownook]

I did have lots of bloods taken by the rheumatologist but when I asked for a copy, his secretary says he does not give them out but she will ask him.

You are legally entitled to printed copies of your blood test results and ranges.

I suggest you politely remind them of this

I was taking vitamin D3, B12 and magnesium, no blood tests results from December 21 and January 22 seem to have tested these or the others you have listed. I’ve stopped them all as well as the statins because I’ve read these will be low when Hashimoto is an issue.

Better really to continue all supplements, apart from stopping vitamin B complex week before any blood test

Optimal vitamin levels are essential for thyroid to work well

Low vitamin levels tend to lower TSH ….to get diagnosed we frequently need optimal vitamin levels first

Thousands upon thousands of U.K. patients forced to test privately to make progress

[Sparklingsunshine]

HiI have fibro and thyroid issues, I've also got joint hypermobility, very bendy joints. I recently had a neck x Ray and I've got osteoarthritis changes in my neck. Very common as we get older. In my case it seems my lax muscles and stretchy ligaments have contributed to more wear and tear on my joints.

Have they considered osteoarthritis in your case? Have you had any treatment for your fibro? I know it's not curable but there are medications that can help with pain, poor sleep etc. Antidepressants can be very effective in controlling pain that painkillers can't touch, like nerve pain. They can help with sleep as well.

[lownook in reply to Sparklingsunshine]

Ah that sounds similar because I do have hypermobility too..they say no to osteoporosis too. The picture post this morning pretty sums up it all.. blood tests say all is fine but your body is falling apart!I was on pregabalin for fibromyalgia, but when after 32 years of abdominal pain, stage 4 endometriosis, plus other gynaecology issues were found. I eventually had a 6 1/2 hour operation with a well know specialist improved my quality of life, but my joint, muscle, tendon and bone pain and other issues still continue. He said I had a fatty liver and to get off them as soon as I could. So I do not take anything now..

I guess I just worry they are missing something again and I’ll end up with more broken bones.

In truth after reading up on statins, it seems that could be my problem but as my gran and mum had high cholesterol too, I worry now I have coming off them.

I just wish they had tested my thyroid before they put me on them and also told me about the muscle issues because I’ve gone from a person that rides a horse , cycles, swims and dog walks daily (exercise is good for high cholesterol) to just dog walking but not holding the lead.

Sorry to moan, I do hope you are doing ok?

[Sparklingsunshine in reply to lownook]

Hi

Well I've got a chronic dizziness issue at the moment so I've been better tbh but seeing the neurologist again next week so hoping he'll have some answers. I'm sorry to hear about all your issues. I wouldn't wish Fibro on anyone.

[shaws]

Quite a number of members on this forum had to diagnose themselves, and I am one of them.

The following link is by a Researcher/doctor/scientist and expert regarding fibromyalgia and problems with the thyroid gland.

His name was Dr John Lowe and he was also an Adviser to Thyroiduk before he died due to a bad fall. He is missed a lot by people who followed his regime.

You may find some of the links below helpful:-

google.com/search?client=fi...

He only prescribed T3 for patients who had fibro and for other patients he prescribed NDTs (natural dessicated thyroid hormones). NDTs saved lives from 1892 onwards but the BTA withdrew this from being prescribed. NDTs supply all of the hormones a health thyroid gland would do.

A higher cholesterol is not uncommon in those who have hypo but taking the proper dose of thyroid hormones reduces it.

[lownook in reply to shaws]

Thanku for this.. I will read about his work.. it’s frustrating not knowing where to start, but you and everyone else already know that 😒

It seems getting diagnosed is hard but getting the right treatment is harder,

I appreciate your help x

[shaws in reply to lownook]

Don't worry as members on this forum are very helpful.

Before I was diagnosed and TSH was 100 GP phoned to tell me that I had no problems at all. I cried because I felt very unwell.

Thankfully I found Thyroiduk before we had this site and I have no symptoms and feel well.

[lownook in reply to shaws]

Really that’s great, so pleased you are well now, that gives me the kick up the bum to get on with this x

[shaws in reply to lownook]

Initially I was prescribed levothyroxine, which is the standard one. It caused me to have severe palpitations and I then went onto T3/T4 but am now on T3 only (rarely prescribed now due to cost). I have no palpitations on T3.

I have recently been diagnosed as having a Polyglandular Autoimmune Disease No.3 as I now have alopecia areata, hypothyroidism, and pernicious anaemia.

I think it may be quite common once we have one autoimmune condition to develop others.

I hope you are symptom-free soon as it does make such a difference to our life-style, i.e. we feel well again.

[lownook in reply to shaws]

There is so much I had no clue about, I naively thought doctors would know what to do…I’m glad you have got to the bottom of what was going on..