Hyperthyroidism caused by Struma Ovarii

[Mandyj2]

Hello,

Does anybody know anything about this please? I’ve used the search facility but not found anything. My GP hasn’t any experience with this and I can’t get hold of my endocrinologist.

Thanks.

[RedApple Administrator]

A quick browse through search engine results brought up this paper, which might be helpful.

An unusual case of struma ovarii edm.bioscientifica.com/view...

[Mandyj2 in reply to RedApple]

Thank you Red Apple, I’ve not found that link/case study before.

[FallingInReverse]

I have no experience with that, but googled out of curiosity, and for other forum member benefit - here’s a good clinical review:

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

Whereas this is an ovarian cyst made up of thyroid tissue (which I didn’t come across an explanation for how that happens).. the issues pointed out are regards to how to deal with the cyst, biopsy results and cyst removal.

The data for causation or correlation for resulting thyroid issues is very light.

Did you get a biopsy?

What were your precise thyroid function test results and ranges (TSH, FT4, FT3 and all antibodies tested) and what treatment have you been on for your thyroid?

Sorry can’t be more helpful in regards to personal experience. I’m thinking since this is clinically so rare there will be few here who do. But the papers I read do provide a lot of info, and if you let us know more about your blood tests and history we might be able to think about those in that context.

Caveat - I am not a doctor, just a fellow thyroid patient asking questions 😀

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edit: whereas SO is a rare type of ovarian cyst and resulting thyroid issues also rare, and therefore there are few large scale studies, here’s one case report you might find useful.

Interesting that antibody tests were negative in this case. Were yours also?

Also, after reading a few more articles it seems that there’s an idea that the cyst comes first and produces thyroid hormone/storm in rare cases, which resolves which removal of the cyst.

Wondering if you have any idea if you may have had the SO before you started having thyroid issues a coupes years ago?

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

We report struma ovarii in a case that had hyperthyroidism and was treated with laparoscopic tumor resection. A 40-year-old Japanese woman presented with tachycardia, finger tremor, and weight loss. Although blood examination showed hyperthyroidism, test results for thyroid stimulating hormone receptor antibody and thyroid stimulating antibody were negative, and thyroid scintigraphy showed no abnormal findings. Because she was diagnosed with an ovarian tumor, and whole-body scintigraphy showed that iodine uptake was detected in the pelvic space, we diagnosed her with an ovarian tumor, which caused excessive thyroid hormone secretion. After controlling the thyroid hormone level, we resected the ovarian tumor laparoscopically. The thyroid hormone level was within the normal range postoperatively without any medications. Based on our experience, physicians need to remember that ovarian tumors can cause hyperthyroidism. Controlling the thyroid hormone level preoperatively by using antithyroid drugs and performing minimally invasive laparoscopic surgery is considered useful for preventing thyroid storm.

Introduction

Struma ovarii is an ovarian tumor defined by the presence of thyroid tissue comprising >50% of the overall mass. It most commonly occurs as part of a teratoma.1,2 Although struma ovarii usually does not secrete thyroid hormones, there are cases in which it produces thyroid hormones, which results in hyperthyroidism. When hyperthyroidism is caused by an ectopic thyroid hormone-producing tumor, it may be difficult to make a diagnosis, and few cases with hyperthyroidism due to struma ovarii have been reported. Here we report a case with hyperthyroidism due to struma ovarii that was diagnosed by whole-body scintigraphy, and treated with antithyroid drugs and laparoscopic tumor resection.

[Mandyj2 in reply to FallingInReverse]

Hello and thank you FallingInReverse.

The typical hyperthyroid symptoms started in October 2022, bloods have been done monthly by GP and I’ve seen an endocrinologist in April and July 2024. These are the latest results:

Serum free T4 level < 2.0 pmol/L [7.7 - 15.1]; Below low reference limit

Serum free triiodothyronine level 26.9 pmol/L [4.3 - 6.8]; Above high reference limit

Serum TSH level 0.032 miu/L [0.34 - 5.6]; Below low reference limit

Trab, TSI, TG, Tpa all negative. Uptake scan was low. Ultrasound clear - no nodules.

Was on 240mg Propanolol daily from March to July, stopped taking it due to hideous insomnia. I begged for Carbimazole but was declined.

In mid July the Endo requested paraprotein, TG & CA-125 tests. I can’t view the results (they are greyed out), can’t contact the Endo and the GP can’t access them as out of NHS area.

On Monday I received a text telling me to attend an ultrasound scan for yesterday. I assumed it was another thyroid ultrasound. On Tuesday I saw a memo on GP surgery app from the Endo senior to my GP stating they suspect Struma and had arranged a pelvic ultrasound under 2 week pathway.

I had the ultrasound yesterday and was told there is a mass. I asked if it could be a fibroid and what size it is. They said it will be measured and in the report that will be available immediately. I can see it is available but I can’t view it, greyed out again.

An hour ago I received an appointment for a pelvic MRI for next Tuesday. I still can’t contact the Endo and my next appointment is mid October.

I tried to keep this short but failed! Sorry.

[FallingInReverse in reply to Mandyj2]

Reiterating my disclaimer here - I never heard of this until your post.

You will do just as well as I to read the various Google/research paper links as I’m sure you have.

So I’m just curious - was there other stuff going on with your ovaries/sexual health that led the doctors to suspect this?

Reading how rare it is… and knowing how common faulty thyroid numbers are, it’s interesting and a great leap for your doctor to suspect that was at play. In the papers I’ve read it looks like it starts with an ovarian cyst being found, and then it being classified as this type, and then in even rarer outcomes it seems to cause thyroid issues.

So… they “suspect “ SO… but you haven’t confirmed yet? All they have is a mass detected right? From the US yesterday. Is this the only investigations you’ve ever had on your ovaries or fibroids or anything in your reproductive health?

Disclaimer again - just asking questions and reading papers!

[Mandyj2 in reply to FallingInReverse]

Hi, I really appreciate your help and links, thank you.

I’ve not been diagnosed with anything. I’m told I have hyperthyroid symtoms but I haven’t been diagnosed as Hyperthyroid. A lot of tests were carried out at my last Endo apt in July but I wasn’t told which tests or why. I can see all the test results on the NHS app apart from the paraprotein, TG and CA-125. I can’t view the ultrasound report from yesterday.

I’ve not had anything going on with gynaecology/sexual health/ovaries etc and wasn’t aware of any thyroid link. I wasn’t told I’d be going for a pelvic ultrasound until last Monday.

As far as I know we have a mass, iffy thyroid numbers and difficult (but improving) hyper symptoms.

[FallingInReverse in reply to Mandyj2]

With that info I’m less sure that the two are related. (Still with the same disclaimer… what do I know!)

pennyannie any thoughts from a hyper/graves/thyroid storm perspective?

[pennyannie in reply to FallingInReverse]

No - I read the links kindly shared but beyond my pay grade and mental agility this late in the day !!!

[FallingInReverse in reply to pennyannie]

🤣 yes it often feels like that huh!

 Mandyj2 without any of us really knowing about this… I’m still curious if it turns out that the mass is not SO. If only because it is so rare that it’s statistically unlikely to be… but hey! It sure is possible.

The US and MRI and 125 test are all in the area of managing the mass. But also remember that ovarian masses/cysts are really quite common - and there a lots of reasons why people get them that have nothing to do with thyroid. At the same time, we do see some co-incidence of PCOS with people with thyroid issues. But it’s not a causal relationship.

So at this point it looks like your dr is looking for a potential cause for your hyper numbers, and is looking into this rare possibility of SO. And finding a mass means they now want to confirm SO (which would be rare, but possible) or alternatively it will rule it out.

But in either event, its good you are checking your thyroid numbers frequently. You didn’t say how you were feeling right now but symptoms are equally important.

Also, can you confirm the exact results of the antibody tests you got, when and how often youve repeated them?

[Mandyj2 in reply to FallingInReverse]

I agree. The more I’ve read the more rare it becomes. S.O alone is rare but to have one that releases T3 is even rarer. My main worry was that the CA-125 was tested 6 weeks ago with paraprotein and they won’t give me the results. When the scan text arrived I worried that something had shown on the results hence doing the US to find a mass. My head even wondered whether they knew the mass was there from the results! Silly I know, the zero communication from the Endo isn’t helping.

I’m trying to list the antibody tests here;

November 2023.

Thyroglobulin Antibodies . 11 IU/mL (Range: < 115

Thyroid Peroxidase Antibodies. 9 IU/mL (Range: < 34)

January 2024

TSH RECEPTOR ABS < 0.3 iu/L [0.0 - 0.9]

15 July 2024

Thyroid peroxidase Ab, blood 0.9 (range 0-9)

TSH Receptor Abs <0.2 iu/L (0.0-0.9)

TSI & thyroglobulin - I can’t view these as Endo has to approve before I can view.

The symptoms have eased slightly since I stopped Propanolol as I’m getting a bit more sleep. Keeping resting heart rate below 110 and trying to reduce blood pressure isn’t easy but yoga and meditation is helping. Constant hunger, sweating, heat intolerance is difficult. The nausea has stopped which I’m so grateful for.

The Endo isn’t interested in symptoms or how they affect my life/are a threat to my job so I’m determined to continue working with a lot of adaptations.

the mass could be anything, I’m hoping to find out more with the MRI. I will update this thread and will let you know whatever it turns out to be.

Thanks for the links, ideas and curiosity!

[helvella Administrator]

The number of papers mentioning struma ovarii has increased hugely over the last ten or so years.

I'd really like to be able to explain - but I know little beyond the very basic existence of the issue.

I hope the papers linked by RedApple and FallingInReverse help.

This search found over 300 papers from the last five years. However, I need to point out that some of these papers could be distressing. They are NOT patient oriented. They are tough reading simply because many are very technical - let alone the emotional and other issues. Many of the papers can be viewed within Europe PMC - and, if not the whole paper, often an abstract.

europepmc.org/search?query=...

If you click on the buttons at the left, you can choose to only see, for example, review papers. Which might be appropriate - and cuts down the number.

Screenshot of paper type selection

[Mandyj2 in reply to helvella]

Hi Helvella, thank you for all the case studies. I see what you mean about technical! I’ve read through a few and did your suggested filter for review papers which are easier to follow. I’d not heard of S.O before so this info has really helped. I think it’s unlikely that I have it but if I do your data suggests it’s highly likely to be benign and that was my main worry.

Thanks for taking the time to search and post.

[FallingInReverse]

Hi Mandy, one more reply from me. When you noted you couldn’t get your test results.

I’m not in the UK, but read often here how you have a legal right to your records. I know there’s that app, but it’s not always perfect, and also how many here make a point to get print outs at reception any time you have an appointment.

The post linked below pinned on this board sharing various ways doctors block patient access. Redacting/withholding is common… but shouldn’t be acceptable.

It’s always a fight with the bureaucracy of the system. As if managing our actual health fears and treatment isn’t enough.

But you deserve your results, especially if the next appointment is months away.

Hoping you can muster the energy and empowerment to at least get your missing results info.

This may help:

healthunlocked.com/thyroidu....

[humanbean]

Thanks for the interesting thread, Mandy. I'd never heard of struma ovarii before. Sorry I can't contribute anything useful.

I hope you get the right diagnosis and treatment soon.

[Regenallotment Ambassador]

hi

Just wanting to reassure you, I had similar tests 2 years ago. I have Hashimoto’s and occasional’swings’ with hyper symptoms. I had an over range CA125, pelvic ultrasound followed by throat MRI with contrast. It turned out to be parathyroid adenoma that they are 100% convinced are benign and uterine fibroids that because of my age should shrink. So watch and wait. Deal with symptoms etc…. This is my lot.

I too was on the 2 week wait and for a struggling NHS that’s a fantastic achievement. It is reassuring. I am sorry you have to wait through the bank holiday though that’s rough. I imagine the greying out is to stop you worrying and seeing results without proper consultation, Dr Google told me I had ovarian cancer and less than 5 years to live which terrified us. The NHS said no, just fibroids and benign adenomas.

However, the experts couldn’t see one of my ovaries on any scans, I feel it ovulate low down in my pelvis near my bowel but of course they don’t listen to me. I am 100% convinced I have thyroid/ovary linked condition that will in time be diagnosed. I read up lots on the same topics you are looking at and I’m sure it’s more common than they make out. 🌱