What should I find out in phone appt?

[KayS68]

Hi.

Have phone appt with endocrine surgeon this week & I want to make sure I ask & find out everything I need to / should know. I have a sinking feeling that he’s going to pass me back to my GP.

The short version (previous posts outline it): was diagnosed with “acute thyroiditis” first week of Feb. Along with low TSH & high FT4 & FT3, my white blood cell counts were high - neutrophils, basophils, lymphocytes, platelets & total shite cell count all high.

As time went on, re-tested & 2 weeks ago:

TSH - 2.23 (0.3 - 4.2)

FT4 11 (12 - 22)

Neutrophils, Basophils, Lymphocytes, Platelets & Total White Blood Cell count all still high.

Parathyroid hormone is 6.2 (2.6 - 6.9)

TPO Ab - negative

Bone profile - all normal.

[Ferritin, B12, folate - we’re low last year - ok now. Not had D3 re-tested.]

Thought I should ask:

1) is my thyroid now going to be under active?

2) what do my chronic WBC levels mean - if they were caused by the thyroiditis, why have they not settled?

Can you think of anything else, based on your knowledge & experience? thank you!

[jimh111]

Point out that your TSH is low for someone with an fT4 which is below normal limits. Ask if your period of thyrotoxicosis (high fT3, fT4) has down-regulated your axis. i.e. has the previous high hormone levels caused your pituitary to produce too little TSH.

[KayS68 in reply to jimh111]

Ok thank you! I know they were checking bone profile and that would be to do with pituitary gland, I think (??) and that was all ok, so I didn't know if that meant that was ruled out. I'm just finding it all so complicated. I was in for ultrasound last week as nodules found that were U3 - was meant to have FNA, but he said I didn't need it. I just don't know enough to say much. If that makes sense.

I'm adding your question onto the notes I am going to have with me. Thank you again!

[KayS68 in reply to jimh111]

Oh also - do you mind if I ask you - would renal function be linked to any of this, as my creatinine and urea are high and my GFR is now 55 - I think that all indicates that my kidneys are not working well. But - again, no idea if there are links. I have tried googling, but I go down these rabbit holes and get more confused!

[jimh111 in reply to KayS68]

Oh, forgot to mention,when describing your cell count be careful not to depress the ‘s’ key when you are aiming for the ‘w’ key !!!

I’ve had a very quick glance at a couple of your earlier posts and you mention thyroid storm. It’s possible this has down-regulated your axis. Sometimes TSH returns back to normal, sometimes it doesn’t. In the meantime it’s important to go by fT3 and fT4 as TSH is unreliable. Push to have your fT3 measured.

The parathyroids (four tiny glands) control mineral balance especially calcium levels by secreting parathyroid hormone (PTH). They are nothing to do with the thyroid but get their name because they are located next to the thyroid. There’s a chance they could be affected by the thyroiditis or the surgery, this is why they checked your bone profile, bone formation is controlled by PTH.

I had high creatinine when I was very hypo. In hypothyroidism creatinine clearance is reduced, the body clears it out more slowly so levels go up. I don’t know about urea and GFR.

[KayS68 in reply to jimh111]

I re-read my post & am laughing!!! Sorry!

They did say that I might go from thyrotoxicosis to normal function, OR go underactive. I guess with my FT4 going low, I was thinking that it might be heading that way. I’ll ask for FT3 to be tested too.

So, I assume they tested bone profile for calcium levels in case the parathyroid showed anything too - but both were ok.

Thank you so much, again. I just want to be prepared & not fobbed off - esp as it’s the consultant, so it’ll be harder to get hold of him again. Plus, last phone appt I came off the phone feeling like I knew nothing more.

I’m lucky to have a very supportive GP - he noted the leukocytosis, neutrophilia with left shift & bands, reactive lymphocytes & thrombocytosis - so he will help me find out more there. A few of them could simply be inflammation, and CRP & ESR were both high, but in my searching for more info, the inflammatory response would be expected to have settled.

In any case, I’m learning fantastic medical terminology.

[Fruitandnutcase in reply to KayS68]

I had a DEXA scan recently, it was decided I have osteoporosis and checking the parathyroid gland was one of the many things they tested for because of how it can affect your bones.

Good luck with your phone consultation- very good idea to make a list in advance and work through it - I do that normally bet even more important for a remote consultation.

[KayS68 in reply to Fruitandnutcase]

Can they treat osteoporosis? Does supplementing help? I’m finding it fascinating the things that are so closely linked - my son had lots of orthopaedic surgery & several other health issues & I now get asked what branch of medicine I’m in, but I would rather be well informed.

Thank you! I hated the last phone appt - it felt rushed & I wasn’t prepared at all. This time I want to have things that I need answering or explaining. I am very lucky to have a fantastic primary care team, so they will always help me get answers.

[SlowDragon Administrator in reply to jimh111]

Asking about a “down regulated HPA axis” ....will almost certainly completely baffle most endocrinologists!

😊

[KayS68 in reply to SlowDragon]

Hahahaha! You know I’m going to be googling this so I can couch it in even more terminology! 😂

A friend on twitter asked if someone could explain something to do with Covid - I replied with a string of medical terminology, but none of it made sense. She kept asking & I kept switching it up. She was very amused, but she actually thought I was explaining it!

[SlowDragon Administrator in reply to KayS68]

Many Patients who develop Hashimoto’s it comes on slowly and insidiously......symptoms frequently start with transient hyperthyroid results and symptoms as thyroid cells breakdown releasing excess thyroid hormones .... If this occurs slowly and fairly mild, often goes undiagnosed...if you just feel full of energy and start loosing a bit of weight ...probably don’t tend to visit GP at that stage

If TSH gets suppressed (down regulating of HPA axis) it can be difficult to get TSH to start to respond correctly...once hypothyroid phase sets in

I strongly suspect this may be reason so many Hashimoto’s patients feel so much worse than their apparently “normal “ or only slightly raised TSH suggests they should

Plus some degree of central hypothyroidism seems to often be involved with Hashimoto’s....and is probably more common than endocrinologists think...certainly central hypothyroidism is very rarely diagnosed

[KayS68 in reply to SlowDragon]

I was texting a friend who knows a lot about thyroid & adrenals and she said “oh the best bit of hyperthyroid is the weight loss” - I never had any & I was so unwell. Lol. I guess that’s lucky as then it was picked up quickly. But why didn’t I get the weight loss?? 😫😂

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) diagnosed by raised Thyroid antibodies

You will need to get full Thyroid testing privately as NHS refuses to test TG antibodies if TPO antibodies are negative

20% of Hashimoto's patients never have raised antibodies so request ultrasound scan

healthunlocked.com/thyroidu...

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels ...so insist on vitamin D tested

Kidney function and Low GFR linked to being hypothyroid

nature.com/articles/s41598-...

ncbi.nlm.nih.gov/pmc/articl...

jasn.asnjournals.org/conten...

[KayS68 in reply to SlowDragon]

The only thing not tested is TG thyroid antibodies - TPO & TSH antibodies were negative. Vitamins were all ok - I double checked. They had been low last year, then supplemented & all ok now.

Had ultrasound twice now - last one was last Weds. he kept asking if I’d been diagnosed with Grave’s.

I’ll read those links - thank you so much.

I just don’t really know what I should be pressing to ask - but you have highlighted TG antibody test.

Thank you again!

[SlowDragon Administrator in reply to KayS68]

So ask for TG antibodies test, NHS unlikely to do it. Likely need to get tested privately

Many Hashimoto’s patients only have high TG antibodies and struggle to get diagnosed

Important to test TSH, Ft4 and Ft3 together

[KayS68 in reply to SlowDragon]

I’ll definitely ask - if they won’t, I will use one of the companies you linked me to previously & get it done privately. My GP will prob agree to get the FT3 done again, if hospital don’t. And I think he will want FBC doing again anyway, so I’ll ask for that to be included with TSH & FT4. Thank you again!!