blood tests: i have fibromyalgia for last 2... - Thyroid UK

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blood tests

lindabre profile image
23 Replies

i have fibromyalgia for last 20 years and recently asked my doctor to check my blood. i am always cold,no energy,cant sleep,no libido, brain fog,light sensitivity,constant back pain with widespread chronic body pain.my doctor tested my blood something came back low and on ringing for results the nurse said take vitamin B and get more tests done. i rang today to get results of tests to be told all fine and come back in a month to check thyroid. My results are

LH 6.3 F.S.H 8.9 CORTISOL RAUL 312 INSULIN 1.06 PROLACTIN 2.50

I dont know what these results mean,I wanted my T4 and T 3 tested as i have seen that these need to be checked are any of these tests covered in list above. i am insisting on seeing doctor in 2 days and will go from there. I thought and hoped this time I would have an answer to my issues. I feel total despair if i start crying i wont be able to stop.Do i accept theses results as everything fine or is there something more to do .Any and all suggestions welcome. I need help. linda

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lindabre
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23 Replies
Clutter profile image
Clutter

Lindabre, There are no thyroid results included above. When you have a thyroid test it should be early in the morning when TSH is highest, and fast (water only) as TSH drops post-prandially.

You can look up lutenising hormone, follicle stimulating hormone and the other tests above for explanation of what they are and why they were ordered on labtestsonline.org.uk

lindabre profile image
lindabre in reply toClutter

thanks so much for reply. i live in ireland and there is not much info available regarding thyroid issues i will go on the suggested website.linda

shaws profile image
shawsAdministrator

You must insist on a Full Thyroid Function test due to your clinical symptoms, i.e. cold etc. etc. He probably wont do a full one but you can get the rest, if you can afford it, by a recommended private lab.

First, you must make the earliest appointment for the blood test and fast (you can drink water). Don't take medication before it but afterwards.

Get a print-out of your results with the ranges and post on a new question. Someone who knows about blood tests will respond re the ones above.

You say you were diagnosed with fibromyalgia and many people have the same diagnosis due to their TSH not 'fitting' into the equation. There is another reason which might fit your symptoms and your problems can be due to Thyroid Hormone Resistance (modern doctors have no knowledge of this phenomenon). I will give you a couple of links for info:

web.archive.org/web/2010103...

web.archive.org/web/2010103...

web.archive.org/web/2010081...

Unfortunately for us Dr Lowe (who was also an Adviser to Thyroiduk) died a couple of years ago and he could have been contacted.

You might be able to source your own hormones with advice from some of our members. Apparently if someone has thyroid hormone resistance only T3 will work.

"I am not a medical professional and this information is not intended to be a substitute for medical guidance from your own doctor. Please check with your personal physician before applying any of these suggestions"

lindabre profile image
lindabre in reply toshaws

thanks so much for the links,easy to get confused with all different sites on web.will log onto these now.linda

Marz profile image
Marz

As you have been diagnosed with Fibromyalgia - I would suggest the following tests for thyroid - TSH - FT4 - FT3 - Anti-bodies - TPO and Tg. It is quite possible the lab will not do the complete profile if the TSH is in range. Could you have them done privately through Thyroid UK ?

Also have tested - VitD - B12 - Ferritin - Folate - as these will also be low.

It is due to the poor testing and understanding of thyroid blood tests that people end up with a diagnosis that is often incorrect - when the underlying or root cause has not been found.

I was diagnosed with Fibro in 2000 and Hashimotos in 2005. As my thyroid treatment improved - and vitamins and minerals - so did the aches and pains.

I would also consider private testing for the 24 hour saliva testing for cortisol - which is often a problem with fibro.

lindabre profile image
lindabre in reply toMarz

thank you for reply, dont feel so down now onwards and upwards linda

lindabre profile image
lindabre in reply toMarz

hi again. i just got results back from B 12 retesting and results were 441 which is shocking to me as initial test done 2 weeks prior was 185.is this possible. i had taken 2 days of B12 1000 and B complex before second test. i cant retest again as i am self medicating B12 50000 for two weeks now.I am waiting to see endocrinologist about low thyroid,do symptoms overlap with thyroid and b12 defeciency. any thoughts?.linda

Marz profile image
Marz in reply tolindabre

Yes the B12 and the complex would have affected your results - as they would have been in the blood stream.  Yes the symptoms do overlap.  Did you have all the other tests I suggested in the post above  - ??

What were your Blue Horizon results ??

NickP1 profile image
NickP1

Hi, INSIST on Anti-bodies - TPO.

I've had fibromyalgia since my late teens. All my thyroid functions over the years have come back as within ranges. Last year was advised to have Anti - TPO tests at the same time as thyroid. T3,T4,TSH all within ranges. Anti-TPO which should have been below 35 was 1335. Diagnosis, Hashimotos.

Don't take no for an answer re your test results. That's bloody disgusting.

lindabre profile image
lindabre in reply toNickP1

Thanks for suggestions,guess I am going to have to become That Patient.linda

Marz profile image
Marz in reply tolindabre

I too had Hashimotos diagnosed with in range TSH - FT4 - FT3. Anti-bodies should be tested as routine - Hashimotos is the most common form of thyroid illness. It's all about money I'm afraid and the fact that few Docs understand auto-immunity.......

faith63 profile image
faith63

you need free t4 free t3 TSH..and thyroid antibodies testing. Maybe you could order your own labs without a prescription through blue horizon. But..after all i have read, if it were me, i would be self medicating with t3, to start, i really would. Fibro is low metabolic rate.

lindabre profile image
lindabre in reply tofaith63

Thank you.I don't know where to go to self Medicate but I will research.I will look on blue horizon for not.linda

fibrolinda profile image
fibrolinda

Hi Linda, I too have fibro, finally diagnosed in 2001. I get an email every month with all the latest news/research on fibro around the world and last year an article on type 2 hypothyroid sent me to thyroid uk website. I looked at the symptom list for hypothyroid and ticked off all but 2 but my GP said all bloods within range. I did a lot of research then did private blood tests via thyroid uk with Blue Horizon... the thyroid 10 test is very good. But hypothyriod type 2 your bloods are normal... well within range anyway but the T3 is not getting where its needed due to bad mitachondria acting like bouncers who wont let anyone in. So results say normal while your body screams help.

From what I have found over the past several months treatment for underactive thyroid will eventually overwhelm the bad mitachondria. I have been self medicating with NDT, natural desicated thyriod, for 5 months now. Early days as I dosed by symptom elimination and ended up way over medicated... lessson learned... I am now on 1 1/2 grains of thyroid s a day. As I shot through my correct dose I stopped citalapram... the worst months for the big black depression are October to February for me for many years yet this year no anti depressants and no black depression :) I sleep great... well apart from pain but thats another thing. No mouth ulcers, cold sores, styes in eyes. My nails grew, no splitting or flaking. My outer eyebrows started to grow back. Oh I could go on. As I over medicated some things came back. Muscle spasms came back, nails strted to split again and eyebrows fell out. But the eyebrows are now looking almost normal and what is growing is dark brown not grey (I'm 59) Nails strting to grow again. I have lost weight, 4 kg and that has been impossible since the 1990s... gained 12 lbs on 800 calrories a day and gp said well I was obviously eating too much. I am burbling on sorry. Still foggy, still in pain, still a long way to go but I am fighting back.

Ask on here there are so many great people who will help who know a heck of a lot more than doctors.

Some think fibro is just undiagnosed thyriod but I don't... I do believe if you have fibro you probably have thyroid problems that need treating. I read an article by a us doctor who said If a fibro patient gets worse a small dose of T3 and T4 can help... not a cure but can greatly improve their symptoms. I thought that'll do me :) Hope... scary :)

good luck and learn.

Linda

faith63 profile image
faith63 in reply tofibrolinda

fibrolinda..did you look at Dr. John Lowes info, on what he did to "cure" fibromyalgia? He was a researcher, studying it for many, many years and many many patients that he made well, rather quickly. He found that thyroid hormone resistance, was usually the main issue. Also alterations in the HPA Axis. He treated his patients with ndt or t3 by itself, plus a protocol. Shaws, on this forum, has the links for this info.

lindabre profile image
lindabre in reply tofaith63

Thanks for advice,have heard of dr Lowe but have not done much research.I am quickly realising I will need to become my own advocate.I have ordered thyroid testing from Blue Horizon so hopefully t time two weeks I will know more.

fibrolinda profile image
fibrolinda in reply tofaith63

thanks faith63, yes I know all about Dr Lowe, his untimely death is a great loss to fibro suffers. His info and Dr Mark Starr info on type 2 hypothyroidism is what set me off on self- treating with NDT. My gp would not treat on symptoms alone but then can't blame him, doubt he wants to get struck off :( . From all I have researched... a lot :) I do not have thyroid hormone resistance... my T3 is now slightly over range with good T4 and ... darn brain blanking on simple word sigh. but tsh is below range... nope word won't come. I believe Fibro is a separate illness to thyroid but that they go hand in hand... BUT I would love to be proved wrong LOL

Someone on here said all her fibro symptoms were gone after 2 years on NDT. Ohhhhhhh hope. If I do not improve any more than I have so far I will still consider it a big win. Improvement after years of deterioration is amazing.

thanks again

Linda (fibrolinda)

faith63 profile image
faith63 in reply tofibrolinda

is it possible that you have a high reverse t3? Dr Lowe said it was temporary, but i tracked mine for 16 months, on different doses of t4 and i determined that i was not converting well. This keeps you hypo at the cellular level. If my free t4 level was even mid range, my reverse t3, was still too high. At 18, top of the range was 22, the doctor said its still too high. You do know about reverse t3?

I just finished 7 weeks of intense muscle tightening and pain..i have never gotten any diagnosis for my pain. I truly believe it is from my hashimotos because it started when i came down with that. it can be gotten rid of tho. Also, diet can cause pain. iall i do is research!

fibrolinda profile image
fibrolinda in reply tofaith63

LOL me to faith63 :) yeah I know about rt3, pretty sure I don't fit the criteria tho as when I over medicated my t3 got up in the 20s and my t4 also. Last test I had got them down t4 back in top of range and t3 just over. Slowly things are settling. Blood pressure now normal/high normal and still reducing and pulse rate in 70s. temp slowly creeping up. I had cortisol high lows which I had to address as well as low ferritin and b12. Its a long journey but it took years to get ill.

Linda :)

lindabre profile image
lindabre

Thank you for sharing your story,hard to do because when you write about your day to say reality fighting this life it is upsetting.linda

lindabre profile image
lindabre in reply tolindabre

Meant to say day to day not day to say.spellcheck!!

faith63 profile image
faith63 in reply tolindabre

this life has become frightening for me, as well. I feel very alone, without doctors backing me up.

Cuddlybarb profile image
Cuddlybarb

Have you had your B12 and folate levels checked ?

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