Questions for endocrinologist

[Selina-E]

Hi everyone,

I’ve been recently diagnosed with hyperthyroidism after having the usual symptoms (elevated heart rate, extreme fatigue, weight loss, hot flushes and bad insomnia). I’m 57, post-menopausal.

Test results were:

TSH < 0.01 mIU/L (0.27-4.2)

FT4 38 pmol/L (12-22)

TSH receptor antibody level < 0.90 iu/L

FBC, Folate, Ferritin, Vit D and B12 were all normal

(FT3 was not tested)

I had a 2-week cancer referral (due to my sister having had thyroid cancer) - saw a hospital consultant and had an ultrasound which showed a few “harmless” cysts but no inflammation or nodules.

Graves disease was ruled out. I asked my GP about the possibility of a pituitary adenoma but he said I would have other symptoms such as headaches and vision problems if that was the case.

(I have bilateral normal tension glaucoma but after trabeculectomy in both eyes, my vision has been stable.)

I’m currently on Propranalol (10mg thrice a day) and Carbimazole (20mg once a day). Thankfully I haven’t got any side effects yet from Carbimazole (have been on it for the last 3 weeks). My heart rate is back to normal and the awful insomnia has gone. I’m still feeling utterly exhausted though and not putting on weight despite an increased food intake - I know it may take a while.

I had an appointment with an endocrinologist in 7 weeks’ time and was expecting that to be cancelled given the Coronavirus situation so I was very surprised to get a call today rescheduling my appointment for this coming Monday by phone!

I have the following questions for the endocrinologist:

- What could be causing my hyperthyroidism?

- Will side effects appear with increased usage of Carbimazole?

- How frequently should blood tests be repeated to check my thyroid levels?

- When could I expect my current symptoms to improve?

- Although neutropenia and agranulocytosis are considered to be rare side effects, I’m concerned that if I get a high fever and no other symptoms, it will be assumed to be Coronavirus and I won’t be given a blood test right away - what should I do in this situation?

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Any other questions I should be asking? Apologies for the long post but I’d really appreciate your help - thank you!

[greygoose]

Yes. You should be asking to be tested for Hashi's. That FT4 result was far more like a Hashi's result than a Grave's. They should have tested for Hashi's at the same time as they did the Grave's antibodies. But, they're always trying to cut corners!

If you have Hashi's, you shouldn't be taking carbi. That's the treatment for Grave's. High levels of thyroid hormone will come down by themselves with Hashi's. And carbi is not appropriate. And, once they have come down, you will probably become hypothyroid, and everyone should be prepared for that. But, they won't be if they don't test the right antibodies. This happens so many times, it's a disgrace!

Stay safe.

[Selina-E in reply to greygoose]

Greygoose, thanks for your reply.

I didn't consider Hashi's because my symptoms didn't match except for the fatigue - is it possible to only have one symptom?

[greygoose in reply to Selina-E]

What do you think the symptoms of Hashi's are? When in the 'hyper' phase, you will have symptoms of hyper. When in a hypo phase you will have symptoms of hypo. There are no specific symptoms of Hashi's.

However, you may have more symptoms than you realise, things you wouldn't think of putting down to thyroid, like dry skin on your elbows.

[Selina-E in reply to greygoose]

I had previously gone through the 21 symptoms listed in the BTF website hypo section and fatigue was the only symptom that matched - honest! I also thought if you were hyper, it would take some time while on medication before you'd turn hypo.

This is all new to me and I feel like I'm stumbling around trying to make sense of all the information that's out there. I'm sure I'll get there in the end...

Thanks for pointing me in that direction though - I need to do some more reading this weekend and be better prepared for Monday.

Good night and have a good weekend

[greygoose in reply to Selina-E]

I'm not sure who the BTF are, but they're very optimistic! There are actually over 300 symptoms of hypothyroidism.

hypothyroidmom.com/300-hypo...?

I also thought if you were hyper, it would take some time while on medication before you'd turn hypo.

Depends. If you have Grave's, yes, it probably would. But with Hashi's it could happen a lot quicker.

I'm sure you'll get there in the end, too, if you keep reading.

[Selina-E in reply to greygoose]

BTF = British Thyroid Foundation

btf-thyroid.org/hypothyroid...

I thought this was a reputable site - I guess I was mistaken!

[greygoose in reply to Selina-E]

I really can't comment on it's reputable status, but we have to be wary of any foundation that is part of the status quo. They are not on the patient's side!

But, to be fair, it doesn't say that they are the only hypo symptoms, just the most common. But, then again, it says:

A thyroid function blood test is a simple and accurate way to check whether your thyroid gland is working properly. An underactive thyroid is typically associated with a thyroid-stimulating hormone (TSH) level above the reference range and a thyroxine (FT4) level that is below the reference range.

Well, the FT4 does not have to be below range to prove that you are hypo, You can be hypo with an FT4 low in range. But, FT4 isn't the most important number, and they don't even mention the FT3! And, so it goes on…

The information you get on there is not false, but strongly biased.

[Alexkjones in reply to greygoose]

Hi grey goose. What’s the test for hashi called? Alex

[greygoose in reply to Alexkjones]

There are two tests, but the NHS will only do one, because they don't understand Hashi's very well. The one they will do is the Thyroid Peroxydase Antibody test (TPOab). The one they don't do is the Thyroglobulin Antibody test (TgAB).

[Angel_of_the_North in reply to Selina-E]

The reason that it is the wrong treatment for Hashis is that true hyperthyroidism or Graves is caused by the thyroid producing too many hormones and carbi stops the thyroid from producing hormones. With Hashis, the hyper "phase" is caused by die-off of thyroid tissue which results in a temporary dump of thyroid hormones into the blood stream - a one off - when those extra hormones have gone, your thyroid will produce a little less hormones than it did before because it is now smaller (as some of it died). That might be enough to make you hypo, or you must just continue to tick along for a few years with a slightly higher than optimal TSH - until the next attack. Carbi might seem to work initially as it will stop your thyroid producing its own hormones while the dumped ones are still there, but since your thyroid doesn't actually overproduce hormones, it will quickly make you hypo and isn't treating the real problem. The beta blocker will be what's really helping with heart rate etc. However, something else could be making you actually hyper - like nodules which produce hormone. That's why it is useful to test for TPO and TG antibodies when the ones for Graves are negative

[Selina-E in reply to Angel_of_the_North]

Thanks Angel_of_the_North, that makes sense, I will definitely be asking for this testing.

If I had nodules, wouldn't they have showed up in the ultrasound?

[mandyjane]

I dont imagine this will happen as you are responding to carbimazole and might have hashis anyway but I think many people here would advise you to avoid surgery if that gets offered at any point. It often seems to lead to a situation of being permanently hypo and not being given enough hormones by NHS to replace.

[Selina-E in reply to mandyjane]

Thanks mandyjane, will keep that in mind. I'm very surgery-averse in general and have only had it previously to save my sight.

[Selina-E]

Wow Lora7again, I've read your story - what a horrendous experience - it must have been incredibly distressing for you and your family. The way you've been treated is utterly disgraceful.

It sounds like you're in remission now? If so, I hope that continues indefinitely...

Re: Propranolol, I've been advised to take up to 3 tablets a day (as required) so I do check my heart rate regularly to make sure it's not too low. I did feel very ill when it was over 120.

Thank you so much for the links, will check them out.

[Hidden]

Hi Lora7again can you tell me the u.s. sites that you like? I have not found any good ones in the US but this site is fantastic! Don't know what I do without it!

[ElRR]

This has some good information on tests. The whole site is amazing. thyroidpharmacist.com/artic...

[Selina-E in reply to ElRR]

Thank you ElRR, I found that incredibly helpful. Everything is very clearly explained - it will make my conversation with the endo so much easier.

[ElRR]

For any test you want, or treatments, go in with research based reasoning why you want it. Endo's aren't so good at listening to thyroid patients, and tend to be a one size fits all for treatments, which obviously doesn't work. Antibody testing will be very important.

[Selina-E]

Update:

I just had a very good call with the NHS endo who asked for a detailed medical history, answered all my questions and agreed that the TPO and TG antibody tests should be included in my next blood test (4 weeks after starting Carbimazole).

Thanks again to everyone who posted. I know there could be a long road ahead but today I feel a little bit in control

[pennyannie in reply to Selina-E]

Hello there Selina -

Well that sounds reassuring and please let us know when you do get the antibody tests -

BUT you'll need to start a new post as this is a ' rolling screen ' for want of a better word and things keep rolling and very few people look back at what happened a week ago, let alone a month.

I guess the volume of post dictates this pace, so, when with these results in 4 weeks time, start a new post with the results and ranges your endo is working from.

If you haven't already completed your profile page this would be worth doing so people can quickly look back to get a fuller health history.

[Selina-E in reply to pennyannie]

Sure Pennyannie, will do.

[StnOBarnett]

Hi, have been on and off hyper since 2003, the treatment has been carbimazole, varying from 30mg a day to 15mg (3x5mg) a week. Came off it about 3 times but for last 5-7 years been on low dosage, came back again beginning of the year, my feeling is that my immune system goes into overdrive and promotes it.Got a flu bug back in December which keeps dragging on, spoke to GP, he said he’d had the same, with this coronvirus going around it makes you wonder. Side effects, marginally hyper, weight loss ( first time 2stone in a month), usually about half stone until carbizole kicks in. Blood tests vary between 4-12 weeks. Good luck. My feeling is that the immune system promotes it, usually caused by other issue, flu , bugs, lack of sleep etc.

Hope this helps

[Selina-E in reply to StnOBarnett]

Hi StnOBarnett,

It's awful isn't it when you feel your own immune system is working against you. Are you getting enough Vit D3, calcium and magnesium?

I had a severe Vit D deficiency which made me feel quite unwell and caused fractures in my feet 10 years ago - I was prescribed 50,000 IU daily for 2 months to get me into the normal range and since then I've been supplementing 2,000 IU daily (this keeps me in the optimal range) and have managed for years to avoid the usual winter bugs and flu and very rarely even get a cold. Sadly, this won't apply to the Coronavirus

Re: the lack of sleep - I don't know anyone who thinks they get enough sleep! For so many people, a good night's sleep is a luxury and it really, really shouldn't be...

I hope you start to feel better soon.