Hurthle Cells and Drs questioning Hypo diagnosis.

[GlowCoach]

Posting on behalf of someone I’m supporting who finds it difficult to use this platform.

She suffers allergy and intolerance symptoms, so with difficulty has now just got onto 25mcgs Levo since being diagnosed hypo with a TSH of 6 and then 8. FT4 under range both times. She has long term symptoms of ME.

She had a thyroid scan and that picked up Hurtle cells and she now has further questions.

She has felt throat/neck swelling and lumpiness for a few years, and old GP said it was anxiety like everything else she has dismissed her with. So now she’s concerned she’s had nodules for years and so now the increased risk of cancer?

An Endo that she saw has said she’s only a bit hypo (LOL!) and she should stop taking the Levo and that he would only treat with a TSH of 20. Her previous 2 years blood results weren’t too bad as she was on glandulars so he thinks this is a recent change in her bloods. Luckily so far GP has taken no notice of this. Clearly this has thrown a cat amongst the pigeons and makes her question herself.

So for the Hurtle cells she’s been referred urgently to an ENT surgeon. She’s wondering if the Endo team are likely to influence ENT team and thus affecting what treatment might be offered following her tests? Maybe it doesn't work like that as it's a separate issue? But having previously read that untreated thyroid can cause nodules it makes her wonder if, if nothing too serious, holding off from any surgery until she can balance thyroid levels might be a good idea? (or not!).

Lastly she has been wondering if her malnourishment has caused the hypothyroidism or if it doesnt work like that? I suppose what Endo said has made her question herself abit, I mean if they dont think she’s hypo then does that mean they think nodules are serious and causing the imbalanced thyroid results?

Apologies if this seems a bit rambling, but some of it I have copy/pasted and changed the person it is written in. Thanks for your thoughts.

[SlowDragon Ambassador]

what are her most recent vitamin D, folate, ferritin and B12 results

What vitamin supplements is she taking

Has she had thyroid antibodies tested

TPo and TG thyroid antibodies for Hashimoto’s

If she has food allergies….autoimmune thyroid disease (hashimoto’s highly likely)

What is her diet like

Vegetarian or vegan

Gluten free

Dairy free

Which brand of levothyroxine is she currently taking

Approx age?

Standard starter dose of levothyroxine is 50mcg unless over 60 years old

Bloods should be retested 6-8 weeks after each dose increase or brand change in levothyroxine

Likely to need several further increases in levothyroxine over coming months

Bloods should be retested 6-8 weeks after each dose increase

Always test thyroid levels early morning, around 9am and last dose levothyroxine 24 hours before test

All four vitamins need to be OPTIMAL

[GlowCoach Administrator in reply to SlowDragon]

Thanks for the response. That's a lot of questions but they don't really address what she wanted to know.

She was recently folate deficient, not least due to restricted diet. About to start supplementing with methylfolate. Best she supplements individually initially so she knows what she's tolerating.

D3, B12 and ferritin are very good due to previous and ongoing supplements.

Diet is restricted due to intolerances but gluten, dairy, soy free.

Previous antibody tests were negative.

[SlowDragon Ambassador in reply to GlowCoach]

as she’s already on gluten, soy and dairy free diet….likely TPO antibodies would be low

Has she also had TG antibodies tested?

If not test privately via Medichecks or Blue horizon

Can’t say anything about Hurtle cells ….that’s obviously down to medics

Would suspect chronic fatigue is more likely undiagnosed hypothyroidism/Hashimoto’s

Has she had, or suspects she may have had, Glandular fever (EBV)

thyroidpharmacist.com/artic...

drhedberg.com/epstein-barr-...

hypothyroidmom.com/hashimot...

drchristianson.com/epstein-...

[SlowDragon Ambassador]

Yes ….definitely want optimal thyroid and vitamin levels before an operation…if it’s necessary

[SlowDragon Ambassador]

that he would only treat with a TSH of 20”

Would run away as fast as possible from this endocrinologist

With two TSH results over 5 …..should be started on levothyroxine ….at 50mcg if under 60 years old

Starting levothyroxine - flow chart 

gps.northcentrallondonccg.n...

pathlabs.rlbuht.nhs.uk/tft_...

Guiding Treatment with Thyroxine: 

In the majority of patients 50-100 μg thyroxine can be used as the starting dose. Alterations in dose are achieved by using 25-50 μg increments and adequacy of the new dose can be confirmed by repeat measurement of TSH after 2-3 months. 

The majority of patients will be clinically euthyroid with a ‘normal’ TSH and having thyroxine replacement in the range 75-150 μg/day (1.6ug/Kg on average).

The recommended approach is to titrate thyroxine therapy against the TSH concentration whilst assessing clinical well-being. The target is a serum TSH within the reference range. 

……The primary target of thyroxine replacement therapy is to make the patient feel well and to achieve a serum TSH that is within the reference range. The corresponding FT4 will be within or slightly above its reference range.

The minimum period to achieve stable concentrations after a change in dose of thyroxine is two months and thyroid function tests should not normally be requested before this period has elapsed.

[Batty1]

She needs to go see a new Endo that current one is dangerous especially since they said she has Hurtle cell.

mayoclinic.org/diseases-con...

Im not saying she has this but its worth reading.

[GlowCoach Administrator]

I'm definitely encouraging her to get a second opinion, especially if he starts saying she should stop treatment!

She does tend to overly worry, not least as she's been gaslighted for years. She's fully aware of the worst possible scenario, but I have seen papers that the majority of hurthle cells found turn out to be benign. It's a shame that not more members who have had hurthle cells have come forward with their experiences.

[Scorpi00 in reply to GlowCoach]

I would find a different endo. I just had a biopsy done on this one nodule. They found scattered hurthle cells which were benign.