New, confused and hoping to pick your brains! - Thyroid UK

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New, confused and hoping to pick your brains!

Cghkent profile image

Hi everyone, I've been reading through various forums hoping to find an answer to my symptoms (aren't we all!) so given how kind and informed you all seem to be (from hard-won experience dealing with medics I'm guessing) I'm hoping you can offer me some guidance.

I've had many, many tests, but I'm hoping some of you may be able to express an opinion on things I should pursue (as getting anything out of my doc is impossible)

I don't have much of a blood test history, but here are the pertinent ones (I think):

(aug 17)

B12 183 ng/L range > 140

folate 15.1 ug/L range > 4.0

MCV (most recent Jan 18)

95 fL ramge 77 - 101 fL

Thyroid Jan 18

T3 4.4 range 3.8 - 6.00 pmol/L

Free T4 10.8 range 8.00- 18.00 pmol/L

TSH 4.243 mU/L range 0.34 to 5.60 mU/L

Apparently the thyroid test my rheumy did in February shows 'raised TSH' according to my spinal consultant but I don't have the details as I can't see the rheumy until May (which I know is not much help) Plus apparently my albumin and leukocytes were flagged up to.

A bit of background: I'll cut a very long story short(ish). Until 2 years ago I was incredibly fit and well, active job, studied part time, climbed mountains and hiked 20 odd miles most weekends. Only annoying health niggle was having to stop running with a mystery hip injury that wouldn't heal.

Then suddenly my toes started to burn, in both feet, out of the blue. within 3 weeks I had to stop working. had all the tests, steroid injections, orthotics... not real answers. Then the orthotics seemed to upset my hips, my back went (slipped disc discovered but spinal surgeon doesn't think its significant), I started to get really bad dizzy spells, low blood pressure, days here and there when the pain of everything was too much I could only rest completely.

Then my hands started to burn randomly throughout the day, sometimes with really bad aches up my arms too. Rheumatologist says its Raynauds (even though it can happen when they haven't been cold), although I have also developed a ridiculous sensitivity to the cold when I was always the one out in all weather in short sleeves.

My periods have gotten ridiculous - cycles ranging from 19 days to 39, despite normal FSH levels (so presumably not perimenopause) plus can be of any thing, up to 11 days, not to mention much more painful. And I'm now on my third coarse of ABX to try to get rid of a UTI.

I wouldn't say I was suffering from bad 'fog' or fatigue but I really really don't have the energy I used to (but I'm kind of scared to admit that in case it all just gets put down to CFS or fibro, which seems to be the way my rheumatologist is heading)

I also have spells where it feels like my whole body is vibrating inside, and spells when my hands shake badly. And some days the muscles in my legs feel very jumpy, and over sensitive to bumping into things.

My physio says my glutes are surprisingly weak too, given my hill climbing background. All in all I'm a broken woman! I've had to quit work, and my volunteer position, and I'm still desperately trying to study for a science degree, but it is painfully slow progress.

If you've got to the end of this, thank you! You've got more patience than me!

I've added this into the PA group too, given my B12 concerns

7 Replies

Such a sad story....

Someone will no doubt be able to comment on thyroid blood results but, you might find this webonnaire by Dr Izabella Wentz contains very useful information. (It ends very soon) :

B12, although in range, is very low and deficiency often coexists with thyroid disease. This couid account for the neurological symptoms of fatigue, tremors, burning feet and vibrations and should be treated adequately without delay. More information on PA forum.

I hope you find answers soon cghkent

I agree with Polaris that this looks more like B12 deficiency - pernicious anaemia. I would suggest you post your blood test results over on the PAS forum here:

The symptoms sound very much like B12 deficiency.

SlowDragon profile image

Your vitamin B12 is extremely low. You need full testing for Pernicious Anaemia

Burning hands or feet is peripheral neuropathy

Low vitamin D can be present too

You need vitamin D tested and ferritin too

Your FT3 is low, your FT4 is very low and TSH is high

UTI are common when hypo too

Essential to test TPO and TG thyroid antibodies for autoimmune thyroid disease also called Hashimoto's diagnosed by high antibodies

TG antibodies can be high due to Hashimoto's and/or Pernicious Anaemia

For full Thyroid evaluation you need TSH, FT4, TT4, FT3 plus TPO and TG thyroid antibodies. Plus vitamin D, folate, ferritin and B12.

Essential to test thyroid antibodies, FT3 and FT4, plus vitamins

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting.

please email Dionne at Thyroid Uk for list of recommended thyroid specialists

Hi. I’m so sorry you’re feeling so horrible and that no doctors are taking action. What you’ve said here sounds much bigger than B12 deficiency. Low B12 doesn’t cause flagged high leukocytes and albumin, a very irregular period, chronic UTI’s, or some of your other symptoms. Your bloods and symptoms sound multiple things are going on. You need a complete work up by a competent doctor. With all your symptoms and that blood work, why wait until May?

Have you done recent urinalysis and a culture of bacteria? If you’re on 3rd round of antibiotics, could be antiobiotic resistance if it’s the same type of antibiotic, unless cultured for verification.

Your irregular cycle could be caused by so many things. When was your last pelvic exam and PAP? Needs full diagnostics, not just FSH, which tells you not much. FSH is only one hormone and doesn’t tell anything about your female hormone levels. Did you happen to test those?

Raynaud’s is often a symptom of an autoimmune disease. Some of your other symptoms sound possibly autoimmune. Not just thyroid autoimmune, Hashimoto’s, but any other autoimmune disease. Have you been tested for elevated thyroid antibodies, TPOab and TGab, basic autoimmune markers, and other autoimmune diseases?

Your shaking hands and vibrating muscles is also very concerning. Parkinson’s needs to be ruled out and needs full investigation to get to the cause of your symptoms.

Regarding your thyroid, your blood work shows hypothyroid. Do you have weight gain, puffy face, swollen neck, edema around your body, constipation and or diarrhea, other hypo symptoms? Is that T3 test a free or total test? It needs to be Free T3 to get the right info about your free and available levels of T3. Total T3 is a combined test, which doesn’t tell you what you need to know. Your FT4 is low. With that TSH level, your FT3 is also probably too low. I don’t see antibodies TPO and TG listed, to rule out AI as cause here.

Hang in there! With the help of a competent and thorough doctor, get to the bottom of this soon, and will be on your way to feeling better!


Jazzw profile image
Jazzw in reply to ShootingStars

So where do you get one of those??

ShootingStars profile image
ShootingStars in reply to Jazzw

A competent doctor? Pray? Ask the universe to send you one? 😉Unfortunately if presented with an incompetent one, dump them immediately before they kill you, weed thru some more, fully vet them, until you find one that doesn’t ignore your bloods and symptoms, but knows how to interpret diagnostics and symptoms. Ask everyone you know, as well as any medical person you encounter, for referrals to good doctors.

Whatever you do, no reason to keep employing an incompetent one who is not in it for the patient’s health.

You are suffering from hypothyroidism and would benefit from thyroid replacement therapy. It can be a fight to get it but your TSH is far too high and your other thyroid readings are too low. I had many of those symptoms why on earth are you bumping into things - I would walk right into people because my propriocetion was really badly affected dropped so much crockery my cupboards were bare! Have a look at this and tick off all that affect you and show GP

Try and persuade your GP for a trial of levothyroxine as all the readings are out of whack. You need 50mcg as a starter (not 25mcg) it is heavily impacting on your life and it could be easy to sort out - if they refuse you should ask them what the heck do they intend to do about it and why should you be refused a trial if they are so clueless about what is going on. If the trial does not help (it will) they can go back to the drawing board.

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