Thyroid, Fibromyalgia or now Empty Sella Syndrome?

[Wispymisty]

Hi everyone

I did post a while ago with my blood results but will add them again below - I'm posting again as I've been thrown into a bit of a quandary and I'm now not sure how to approach my GP. I currently have a diagnosis of fibromyalgia and low b12.

I have been meaning to revisit GP to ask for thyroid antibodies to be tested but the one I usually see was away until this week and I've not managed an appointment.

In the meantime I've had 9 months or thereabouts with pain or discomfort around my left hand jaw and ear - sometimes giving a fuzzy ear feeling or making that side of my face feel like when a dental anaesthetic wears off. Have seen GP and dentist with this culminating in a Maxillo Facial referral. She arranged ultrasound of parotid glands and then head mri - when I saw her 2 weeks ago she told me the mri was normal and that it was most likely trigeminal neuralgia pain. She did say she'd ask GP to refer to neurology.

I've just read the letter on my computerised notes - I didn't get a copy although I was supposed to - she's actually asked me to be referred to pain management (who I'm already under) but most importantly says in the letter that it was the trigeminal nerve that was normal on the mri but the scan did show I had an empty sella (the bit around the pituitary gland as far as I can tell). Now on a brief search with Dr Google it would seem that although some people are untroubled with this others end up diagnosed with ME, or other fatigue related illness or may have thyroid hormone issues.

I'm thinking that a GP will just try and fob me off as it's outside their expertise but wonder who I could ask to be referred to (and whether they'd even do a referral anyway) would it be endocrinology or a different department?

My blood results were : my TSH levels have historically been around 1.4-1.8 but in November it jumped to 4.2 (range 0.27-4.5)- the test was only taken a day or two after my 3 monthly B12 inj. My GP agreed to retest and add T3 and T4 - this time the test was about 8 days after a B12 Inj. The results were TSH 1.8 (range 0.27-4.5), T4 12.7 (range 11.0-23.0)and Serum free triiodothyronine (is that the T3?) was 4.52 (range 3.1-6.8).

I'd appreciate any thoughts - thanks in advance

Wispymisty :o)

[Judithdalston]

Sorry can you just clarify are you on levothyroxin and T3 now, if so how much of both, and was the blood test TSH 1.8; FT4 12.7 and FT3 4.42 taken after you had been on a fixed dose of these after 6 weeks or so?

I have hypothyroidism and fibromyalgia diagnosed about 15 and 4 years respectively, but from nearly 40 years ago (peaking about 25 years ago) started to have various symptoms that were found to be spine / misaligned vertebrae related...this included various trapped nerves( creating anything from just stabbing pain to fits, tingling and vertigo). It can include tingling of the trigeminal nerve( and weird popping off ears). This problem nerve seems to have got worse this last few weeks, along with tingling in fingers/ toes etc and am asking for B12 related tests ( my active B12 is good, but want MMA etc tests) this coming week at the Gps. Researching b12 injections seems you can feel worse before you get better as nerves ‘wake up’. Don’t know anything about empty sella, but certainly believe link to hypo. and fibromyalgia, and ‘strange’ nerve signals. If you are on thyroid hormone replacements then you look like you could do with increasing them to get a TSH of 1 or under, and active FT3 raised....getting the dosing correct might improve other symptoms.

[Wispymisty in reply to Judithdalston]

Hi - thanks for your reply. I'm not on any thyroid meds at present as GPs just say my bloods are all on range. I do have some disc issues in. My neck (forgot to say) and I do get tingling sensation down my arm from that.

Thanks again :o)

[Angel_of_the_North in reply to Wispymisty]

Your free T4 is very low compared to you r TSH. That, coupled with empty sella, suggests possibility of central hypothyroidism, but you need a good endo who understand thyroid and pituitary issues to diagnose it

[SlowDragon Administrator]

Empty sella can cause central hypothyroidism

ncbi.nlm.nih.gov/pubmed/162...

Interesting that also Hashimoto's is common too

ncbi.nlm.nih.gov/pubmed/198...

academic.oup.com/jcem/artic...

[Wispymisty in reply to SlowDragon]

Many thanks for that SlowDragon - interesting findings.

Hopefully I can get a face to face with my GP next week and see if he will consider further testing for me.

[Wispymisty]

I was just wondering whether anyone had any thoughts on what tests I should ask for? I'm thinking full thyroid bloods including antibodies and cortisol testing; the to potentially ask for a referral to an endocrinologist?

Can anyone think of anything else?

Thanks in advance :o)

[Angel_of_the_North in reply to Wispymisty]

Sex hormones also can be affected by empty sella so oestrogen, progesterone, testosterone and DHEA tests

[Wispymisty in reply to Angel_of_the_North]

Hi - thanks for both of your replies - I shall add these to my list :o)

[Merlinmog]

Hi

I have just been diagnosed with empty sella syndrome and I'm going to be referred to the endocrine department .I have had a permanent headache for 3 and a half years and I've had lupus for nearly 20 years.I have totally been fobbed off by the nh s and I've had to fight to get a diagnosis i am currently waiting for MRI results as a large white spot showed up on my last one.I really hope you get to the bottom of things and that you feel better soon.