Help needed possible hashimotos or is it fibromyalgia

[Ali1972]

Just got blood results from GP after difficulty in obtaining a copy. I thought TSH tested but no test done!

I was diagnosed initially by myself and confirmed by GP with fibromyalgia in 2016. I believe (although now don't know) that thyroid tested in April 2015 when I went to gp with pain, stiffness, fatigue, changes in period, headaches, and difficulty sleeping. I was told all hormones fine and advised to get coil fitted which I did. I also had back and neck x-ray due to chronic pain. MRI showed up degeneration in 2 vertibraes, 1 in neck and 1 in lumber spine. My main problems still occuring are pain and stiffness, constipation, fluid retention in stomach, ankles, feet, (I saw physio last year for plantar fasciitis but feet still sore) and swelling just below knees. My periods are irregular now although these stopped in 2014( put down to stress), I have sore breasts, no sex drive, am chronically exhausted (so much so I often have to go back to bed for a nap and finally the reason I went back to go this year was due to swelling in neck, it's like having a shirt on when your tie is too tight. This is impacting on breathing as I feel breathless, my voice is hoarse and throat sore although tonsils removed as a child. I also have ringing in My ears and am often dizy and feel like vision is in soft focus. My gp did refer me to endocrinologist in April, after saying swelling in neck was a goiitre but waiting list is at least 14 weeks so I thought I'd speed things up by ordering private thyroid tests. I have ordered blue horizon thyroid plus 11 test privately. The gp also said all bloods "normal" and i specifically asked about TSH. I am 46 and stay in Scotland. Has anyone experienced anything similar or advice on what to do now? My bloods from March 2018 are

FBC

Haemoglobin 148 g/l (120 - 160)

RBC 4.9 x10^12/1 (4.0 - 5.0)

Haematoceit - PVC 0.47 l/l (0.37 - 0.47)

Mean corpuscular volume (MCV) 94 fl (82 - 99)

Mean corpusc haemoglobin (MCH) 30 pg (27 - 32)

Platelet count 263 x 10^9/1 (140 - 400)

Total white cell count 7.9 x 10^9/1 (4 - 10)

Neutrophil count 4.5 x 10^9/1 (1.5 - 7)

* Eosinophil count 0.08 x 10^9/1 (0.1 - 0.5)

Basophil count 0.06 x 10^9/1 (0.01 - 0.1)

Lymphocyte count 2.6 x 10^9/1 (1.5 - 4.0)

Monocyte count 0.4 x 10^9/1 (0.2 - 0.8)

Large unstained cells 0.2 x10^9/1 ( 0.05 - 0.5)

Blood haematinic levels

Serum vitamin b12 583ng/l (200 - 700)

Serum ferritin 74.0 ug/l (7.0 - 150.0)

Serum folate 7.0 ug/l (3.0 - 20.0)

Vitamin b12 deficiency highly unlikely

Serum C reactive protein 5 mg/L (0 - 4)

I love in a small town so changing gp isn't really an option. I've lost all faith in NHS can't afford private and feel I'm fighting a losing battle with my health and GP.

[shaws Administrator]

Welcome to our forum but there's no results for thyroid hormones. i.e. TSH, T4, T3, Free T4, Free T3 and thyriod antibodies.

Fbromyalgia can also be due to too low a Free T3 although I doubt any GP is aware of this. I shall give you a list of clinical symptoms and tick the ones you have and ask your GP to do the above tests. Endocrinologists and GPs seem to have no idea about clinical symptoms and that's how we used to be diagnosed before blood tests were introduced. I myself think symptoms are far more important than a blood test as the TSH varies throughout the day.

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

thyroiduk.org.uk/tuk/about_...

NHS usually only do TSH and T4 for diagnosis but if GP hasn't tested for thyroid ask for thyroid antibodies to be tested. If antibodies are present you have an Autoimmune Thyroid Disease - the commonest form of hypo as the antibodies attack the gland and wax and wane until the person is hypo.

If she is suggesting fibro it looks as it she hasn't tested thyroid hormones. Ask for the above on the top para. She or lab may not do all of them but ask anyway. Those not tested you can get from one of our private labs. FT4 and FT3 are really important but not often tested. I will give you a link and read about the Frees:-

thyroiduk.org.uk/tuk/testin...

All blood tests for thyroid hormones have to be at the very earliest, fasting (you can drink water) and if you were taking thyroid hormones you'd allow a gap between last dose and test and take afterwards.

[Ali1972 in reply to shaws]

Thanks for getting back to me. From reading Dr Lowe's article on low t3 in fibromyalgia I did wonder about thyroid before but had thought they had tested this back in 2015. Stupid me for trusting NHS. Then from reading this forum and realising NHS dont test t3 i tought id go private, thats why i asked for a copy of my latest bloid yest ti see what thyroid levels were onlybto find out thyroid notbeven tested! so blue horizon plus 11 test is on its way to me now. t3, thyroid antibodies and vitamin d will be checked and hopefully I'll have an answer next week. I can tick almost all symptoms on thyroid UK list but know fibromyalgia symptoms are similar. Its the goitre that leads me to thinking it's thyroid related.

[Judithdalston]

Hello Ali, I have had hypothyroidism( Hashimoto's) diagnosed in 2006, and after various other problems was diagnosed with fibromyalgia last May by a rheumatologist. I am surprised your Gp has diagnosed it, as it is largely a diagnosis of exclusion and rheumatologists seem to be the last specialist in the line. But fibromyalgia is a very negative diagnosis - all you get given is pain relief and pain clinics. Having spent the winter on a sofa 24/7 unable to walk more than a few feet, I too researched Dr. Lowe's work and belief that fibromyalgia is really poorly controlled or undiagnosed hypothyroidism. I discovered that my TSH levels had increased over the last 3 years, though the GP had not mentioned it- results were 'normal'. Since February I have actively increased my thyroid health raising my levothyroxin dose( My TSH remained in the GP's normal range), dropping it below 1, and on confirmation that my T4 was not converting properly to T3, added T3 ( bought privately from abroad). I also improved my D3 , ( my B12 was over range), folate and ferritin. I still have a way to go, but I am now happily walking, not falling asleep regularly during the day and feelng perkier brain-wise. I have had lots of spine/ neck problems over the years too. I am pleased you are taking control of your own health, with the help of this forum, you will probably make a better job of it than your doctors, sadly.

[pennyannie]

Hello Ali, you have come to the right place. The support and advice on this site is sound - you will need to read up on everything and, if your brain and retention are anything like mine were, you maybe rereading some articles several times over. It's hard to acknowledge that the help available isn't what you thought it was going to be - disillusionment in a time of ill health is disconcerting - but there is " light " at the end of the tunnel - you've tuned in and there are many here on the same wavelength. Welcome !

[Mamapea1]

Ali, you have done exactly the right thing in ordering the plus 11 test, and you certainly seem hypo! I can't afford to go private either, due to being ill for so long 😕 but don't worry, you will get excellent advice and help on here👍, and some members have still had problems with private Endos anyway, although TUK has a 'recommended' list to make life easier😊.

Can't believe they're not even testing TSH now even with all those symptoms!😳. I'm a bit cynical, but I suppose you're worth more in Big Pharma💰if you've got fibro ~ that diagnosis must be worth it's weight in gold ~ all those painkillers and antid's etc.!

I'm just wondering, if you were told 'all hormones normal' why were you advised to have a coil fitted? Was it because of peri menopause? and have you felt better or worse since you had it?

If you're not taking anything useful for the constipation, try some magnesium citrate powder ~ (I use viridian, but there's lots to choose from), and also Linusit golden linseed ~ goes slimy when ingested to smooth passage, and is high in omega 3. I just take a spoonful with live yoghurt or kefir. I hope your test gives some answers ~ good luck 🍀 xx

[Hidden]

I also have a goitre and your description of wearing a too tight shirt is spot on. GP and Endo dismissed it as ' nothing' ( tho it was scanned, non cancerous)

I've been diagnosed with fibro, both privately and by NHS Rheumy. Rhe foot pain was driving me mad. I've put gel insoles in every pair if shoes, even my slippers. Superdrug's own brand are as good as dearer ones. I also massage magnesium oil into my feet, which really helps. Either buy a spray online or make your own. 100 ml hot water, start spooning in magnesium flakes and stir until you reach a saturated solution, it's all dissolved in the water except a few flakes left. Cool and store in a spray bottle if you have one, or a glass jar. It'll sting if you have any cuts on your skin but is the best help I've found for my feet.

I also had IBS until I started taking a probiotic ( Solgar's) daily.

[Ali1972]

Dear all thank you so much for your help and advice. Judith so sorry your fibro has been playing up. When I first fell ill I could hardly walk from my living room to my kitchen it was awful. I was off work ( and i work from home) from January 2015 - September. Its really great to hear how your improving taking t3. As far as I know my thyroid was checked in April 2015 and it was normal but i didn't see the results, since I thought they had tested this again in March this year and they hadn't so i really dont know. My sleep is awful and according to my fitbit is very restless. I went from 7 hours when taking loads of medication to 5. I averaged this for months and was prescribed zolpiden. My legs jump about a lot and really ache so dr said restless leg syndrome. She did say she could prescribe me something else but I'd prefer to find out the cause and asked to be referred to a sleep clinic but was told they prefer to keep things "in-house". Sleep is now down to 3.5 - 4.5 hours, so progressively getting worse.

They told me to to get coil as I was bleeding irregularly. I had been on the pill for years but period stopped summer 2014 and then came back irregularly and for a prolonged time in 2015. I asked about premenopausal and that'swhen they said no as hormones fine although they did do a biopsy of my womb before putting in the coil. To be honest I don't really notice any difference. Hollyberry so sorry they are leaving your goitre, are you on any thyroid meds? How long has it been going on and how does it impact on your activity levels?

I've now done my blood test and have asked for report. Hopefully this will give me some answers this week. I've also received my date for endocrinologist (19 June) coincidentally typed on the same day I asked my gp surgery for a copy of my latest blood test.

Thank you all so much, i really appreciate your advice and support xxx