Thyroid UK
82,711 members97,744 posts

Did anyone have a misdiagnosis before being diagnosed with Hashimoto disease?

Hi and help please, new to HealthUnlocked,

A p Post menopausal lady here, suffering from misdiagnosis I think, would love to hear from anyone who might have similar experience. Endocrinologist and doctor put everything down to hormone imbalance and my Hypermobility syndrome. BUT I think I have a thyroid problem, though Endocrinologist checked thyroid levels and apparently functioning fine.

My question is, can your thyroid levels look ok on paper but your thyroid still give you problems?

I have a painful lump on front lower neck, had an ultrasound, they found two cysts but insist would not cause pain or lump.

I have massive throbbing pain in base of my thumbs and swelling, pain radiates through wrist, wrists very weak. Been told it's osteoarthritis. Wrist pain diagnosed as DeQuervain's, tendonitis, had steroid injections.

I had a frozen shoulder which turned into a shoulder impingement, had operation, did not work, still have pain, now in BOTH shoulders. Also tennis elbow on/off.

I have pain in all joints, hips, big toe joint, knees, back (top and bottom of spine).

Massive anxiety, panic attacks.

Stomach bloating and pain, endoscopy today, they say it is Gastritis.

Been diagnosed with Osteoporosis too but can't tolerate calcium. Think my body not processing calcium, Vit D levels tested and ok.

Had 3 op's on legs, varicose vein pain, resolved but now pain in backs of knees but do not think vein related.

Endocrinologist put me on HRT cocktail but no improvement to above symtoms.

Doctor thinks I am a hypochondriac, so much wrong! I am convinced I have Hashimoto disease but no one listening, only me connecting the dots with symptoms! Seems like doctors look at test results, not symptoms :o(

Have such dry skin, breaking ridged nails, massive weight gain all of a sudden, not changed diet so blamed it on HRT, but maybe thyroid? Hair loss on/off.

So, anyone out there can relate? Maybe you have Hashimoto and had a long, difficult time getting diagnosed?

Any thoughts much appreciated, just don't know what to do next. Before all this had my gall bladder out, endometriosis and knee athroscopy plus 14 yrs ago had non-hogkins lymphoma (a lump on head turned out to be Cancer, had radiotherapy). Paranoid about cysts in thyroid now after radiation treatment I had, was told at time lump on head 'just a cyst, nothing to worry about', six months later turned out to be Big C!

Now they tell me cysts in thyroid are normal!?

I know there are no medics out there, just looking for any folk like me, been given run around with similar symptoms, nothing like first hand experience!

Thank you for reading x

17 Replies
oldestnewest

You may be right. It’s definitely worth checking it out.

First things first. Do you have the results to your thyroid blood tests at all?

Reply

Thank you for replying. Yes, I have thyroid results, no idea how to read them:

Thyroid Function Tests

Serum free thyroxine 17.2. Prol/L 12-22

Serum TSH 2.05. My/L 0.27-4.2

Have much more besides but not sure related I.e. Results for :

Prolactin, serum

Serum FSH

Let me know if you need more ... double Dutch to me!

Reply

Hi ElleOmar and welcome to the forum :) When you say the endo checked your thyroid, do you happen to know what tests she did? And do you have a print out of the results? If you have, edit your post to include your results. That way, people can give you an idea of what might be going on.

A lot of docs will only test TSH (thyroid stimulating hormone), but to get a proper idea of what's going on you need to have free T4, free T3, and two different thyroid antibodies tested for. Something called reverse T3 is also sometimes tested.

I couldn't get mine checked via the GP so forked out to have them tested privately - this is the test I had done: medichecks.com/thyroid-func... which includes Reverse T3 too, plus some vital nutrients that are involved with thyroid function. I cried when I got the results, as it showed I was out of range on T3 (which is the active hormone that T4 needs to be turned in to). I'm 50 and have had a life time of diagnoses such as depression, M.E. Chronic Fatigue, familial hypercholesterolaemia blah blah.

I'm quite a newbie here and still learning, but you'll get some replies from some more knowledgeable people too.

Sorry to hear that you've had such a rough and awful time. I hope you get some answers!

Reply

Thanks so much, sorry you have had a terrible time too! Sometimes feel I would do better at the vets!

I was thinking perhaps the only way is private, will check out the test you did, will post my thyroid blood results too.

So lovely to hear from you. Sometimes I think the people around me have given up listening! You know what I mean x

1 like
Reply

Yes, I know what you mean! And it's even worse when you feel like doctors have given up on you, and just throw another pill at you. Argh! Funnily enough I nearly replied to someone earlier saying that I was thinking of registering at my cat's vets instead.... !

A lot of people here have paid privately to have a test done. If you're already under an endo, you might be able to persuade him or her to test for T3.

As I said, I'm a beginner at all this but I'll try to comment as best I can....

Serum free thyroxine 17.2. Prol/L 12-22 This is your free T4. Yours is at 17.2 and the 12-22 is the 'range'. I'm very mathematically challenged and can never work out the formula, but a 'good' T4 result should be in the upper quartile of the range.

Serum TSH 2.05. My/L 0.27-4.2 This is your Thyroid Stimulating Hormone, which is produced (I think) by the pituitary gland. It's the main test that doctors use, but it is definitely not infallible. Yours doesn't seem high, but neither was mine. Mine has been 'normal' since I first asked for thyroid tests to be done in my 20s! But my T3 was under range.

Prolactin, serum I think this one can indicate if the pituitary isn't working as well as it could, so this is relevant, so yes, add it. Someone with more knowledge will give you some answers.

You do need to know what your free T3 is. See if your Endo will test for it and if not, consider paying privately for a thyroid profile test. Medichecks.com and Blue Horizon both offer them, and often have special offers too. Medichecks, for example, I think has 'Thyroid Thursday' offers.

Thyroid antibodies would also need checking. The link I gave you earlier is a comprehensive test, along with the critical nutrients that are important.

I totally get how frustrating and soul destroying it is when you are trying to get to the root cause of why you feel so awful all the time, and come up against brick walls. I wish you the best of luck finding answers!

2 likes
Reply

Thank you for replying. Yes, I have thyroid results, no idea how to read them:

Thyroid Function Tests

Serum free thyroxine 17.2. Prol/L 12-22

Serum TSH 2.05. My/L 0.27-4.2

Have much more besides but not sure related I.e. Results for :

Prolactin, serum

Serum FSH

Let me know if you need more ... double Dutch to me!

Reply

Have you got any results that say TPO or TgAB next to them? Thyroid antibodies.

What was your Vit D result? Did you have a B12 result?

Reply

Yes, got B12 results:

Serum vitamin b12 564. Ng/L 197-771

Serum folate 11.2. Ug/L 1.9-25

Doctor just said vit D ok, no numbers

Can't see TPO or TRAB on my blood results?

So lovely of you to take an interest x

Reply

Have you been seen by a rheumatologist for your joint pain and swelling? If not, you should try to get checked out by one and rule out rheumatoid arthritis which is another autoimmune disorder.

1 like
Reply

I was thinking that the wrist/thumb symptoms are classic indicators of early RA, and GP should have ruled this out before treating for osteoarthritis and tendonitis. I had the same symptoms of RA and have treated successfully with the Low Dose Naltrexone protocol under a private doctor.

1 like
Reply

Thanks for your message, love your torture cat 🐱

I did get tested for RA a while back but think it is time to get tested again, seeing doctor Tuesday so will suggest it. Just keep hoping if I get the right diagnosis and take the right meds, things will be better. Do the RA meds help manage pain or do they stop inflammation or both? All about trying to get a better quality of life, hope you found it.

All the best x

Reply

Torture cat?!

How did you know? :-) She's sweet, but quite a handful these days...

The LDN is regarded as experimental by mainstream medicine. For me it reduces both pain and inflammation. So relieved to have found a solution.

Reply

Meant TORTIE ref her colouring, was not insulting her personality, damn autocorrect spelling, lol!

Think I will have to go private to get results, just hard to know who to trust! How did you find a private doctor? Did you just google? Guess I could ask my doctor for a private referral. Bit scared of the cost though ... but must consider myself worth it!

Thanks for info. Will let you know how I go ....

1 like
Reply

I suspected auto-correct at work there. :-D

Are you in the UK? If so, look up Dicksons Chemist in Glasgow. They compound LDN in various formulations and have some sort of system for telephone consultations to allow people with autoimmune conditions to obtain a prescription.

The doctor I consult privately is Sarah Myhill. I was lucky enough to come across her a long time ago - long before her patient list grew so large that she had to close it.

Reply

Am in Brighton, a long way away but in UK so will do a bit of research online x

Reply

They post out prescriptions nationally.

dicksonchemist.co.uk/new/

Good luck. :-)

Reply

Hi, yes, on waiting list to see rheumatologist but had a test ages ago. Will get tested again, just hoping if I do have an autoimmune disease, I can fight it with the right meds/diet/ lifestyle. Thanks for your thoughts x

Reply

You may also like...