greygoose

I don't have hyperthyroidism, and I'm not a doctor. But, from experience of reading on here, I would say that your results look more like you have Hashi's than Grave's.

I take it your doctor did not test any antibodies. Without antibody tests he cannot conclusively diagnose you with anything.

The antibodies you need tested are:

TPO/Tg for Hashi's.

TRAB/TSI for Grave's.

Your GP can test for Hashi's, but I believe only an endo can order TRAB or TSI tests. But, if your GP thinks you are hyper, he should be referring you to an endo, anyway. Treating hyperthyroidism is not within his remit.

You should be seen by an endo as soon as possible, and there you can ask him to test for antibodies - in fact, you should insist on it. If you have Hashi's then carbimazole is not the right treatment for you. GPs do not understand that, nor do they know that the levels will go down by themselves, and you will then become hypo. So, tell your GP you want a referral to an endo right now.

Redrosegirlie in reply to greygoose

Thanks for your reply greygoose.

What makes you think it is Hashimotos? All the results point to Hyperthyroidism and the path lab has suggested this diagnosis. I haven’t had any further tests done. Hopefully they will do the antibodies testing in the hospital outpatients clinic

The GP was a little dismissive but he has said he will refer me to an endocrinologist but that this takes 2-3 months.

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greygoose in reply to Redrosegirlie

Why do I think it's Hashi's and not Grave's? Because of the levels of your FT4 and FT3. If you had Grave's they would be a lot higher than that.

However, with Hashi's, when one has a Hashi's 'hyper' swing (it's not true hyper), levels typically go up to around 30 for the FT4 and 10 for the FT3.

I say it's not true hyper because it's not a case of they thyroid making too much hormone, as it is in Grave's. What happens is that the immune system attacks the thyroid, damaging some of the cells inside, and as the cells die off, they dump all their store of hormone into the blood, causing levels of FT4/3 to rise, and therefore the TSH drops. But, it's only temporary. And, there's nothing wrong with the thyroid itself, except that it's being slowly destroyed by the body's own immune system.

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MaisieGray

I second greygoose's advice re. referral to an Endo because that is the NICE Clinical Knowledge Summary guidance to Drs, particularly "Refer all other people with overt hyperthyroidism to an endocrinologist, the urgency depending on clinical judgement, for further investigations and management." That can be found here, which you may wish to remind your GP about: cks.nice.org.uk/hyperthyroi...

MaisieGray in reply to MaisieGray

"All the results point to Hyperthyroidism" - the results indicate that there is currently an excess of thyroid hormones in your blood, but not "why" there is. Hypothyroidism is far more prevalent than Hyper (4.6% and 1.3% US population respectively, for instance), and a Hashi flare can cause there to be elevated levels of hormones, as dying cells "dump" the hormones into the blood. So in the absence of the relevent antibody tests and/or scan, it isn't possible to do other than make a guess as to cause.

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SlowDragonAdministrator

We see many early stage Hashimoto's patients misdiagnosed as having Graves

Essential to test ALL thyroid antibodies, often only an endocrinologist can order TSI or TRab antibodies testing for Graves

Good idea to get thyroid ultrasound too, to check for hot nodules as possible cause

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies for Hashimoto's (and possibly Graves) and also very important to test vitamin D, folate, ferritin and B12

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Private testing for suspected Graves - TRab antibodies

medichecks.com/thyroid-func...

All thyroid blood tests should ideally be done as early as possible in morning and fasting. This gives highest TSH and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If TPO or TG antibodies are very high this is usually Hashimoto's, (also known by medics here in UK more commonly as autoimmune thyroid disease). Mildly raised TPO or TG can be Graves. To confirm Graves you need TSI or TRab antibodies tested

About 90% of all hypothyroidism in Uk is due to Hashimoto's.

Low vitamins are especially common with Hashimoto's or Graves. Food intolerances are very common too, especially gluten. So it's important to get ALL thyroid antibodies tested at least once .

Link about thyroid blood tests

thyroiduk.org/tuk/testing/t...

Link about antibodies and Hashimoto's

thyroiduk.org.uk/tuk/about_...

thyroiduk.org.uk/tuk/about_...

List of hypothyroid symptoms

thyroiduk.org.uk/tuk/about_...

Redrosegirlie

greygoose, MaisieGray & SlowDragon thanks very much for your replies.

I was confused before but even more so now ☺️

I really don’t know now whether to take this Carbimazole that has been prescribed.

If it helps, in December 2017 due to hypo symptoms I had a normal TSH 2.9 (0.35-5.00) and normal T4 21.4 (11-23). Obvs no treatment px.

I will be asking for all of these blood tests when I see the endocrinologist

greygoose in reply to Redrosegirlie

Sorry, didn't see this reply before, because you didn't click on any of the blue 'Reply' buttons under the comments.

But, have seen your new post, and you didn't take the carbi, which was the right decision.

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knitwitty

Hi Redrosegirlie

I was in a very similar situation to you earlier this year. I went to see my GP because I had been suffering from many Hypo symptoms on and off for years, but they had worsened progressively since the New Year along with weight gain etc.

When my blood test results came back they showed that I was very Hyper, from memory my TSH was around 0.005, T4 about 28 and T3 9+ I did then have some severe hyper symptoms but they were very short lived ( about 1-2 weeks) I then felt great for about 2 weeks and within 6 weeks my TSH had risen to 4+ my T4 and T3 had also dropped down to the very bottom of the range.

My GP started me on levothyroxine 25mcg and it has been increased since then, I am waiting to see an endo as it is unclear whether I'm converting T4 to T3.

I just wanted to say that Greygoose is spot on when she says that from the description of your symptoms you sound as though you are hypo not hyper, but to determine that you need antibodies testing, and the hypo antibodies do not always show up, I had quite a few blood tests before raised antibodies raised their ugly heads.

You may have to resort to private testing ( I have used both medichecks and Blue horizon) but at least you are in control of the situation and what is actually tested, it's wrong that you have to go down that route but at least you'll have clear picture of what's going on, others on here will be able to help you to interpret your results and explain what they mean.

The interim GP I saw because my blood test results came back as hyper was going to start me on carbimazole based on the blood test results which with hindsight would have been the completely wrong treatment as I am hypo, as I originally thought, the hyper was temporary because of the antibody attack on my thyroid.

Insist on full testing before starting any treatment.

Good luck, I know how difficult it is when you feel unwell and unsure of yourself, people on this sight are great for guiding you in the right direction.

Redrosegirlie in reply to knitwitty

Thank you knitwitty.

It’s awful that complicated as it is a lot of GP’s don’t understand it.

When I have enough money I will probably go down the private testing route

I haven’t started the Carbimazole.

I have made an appointment to see a different GP in another practice within the group for a second opinion but that’s not until 11th December. I’ll take it from there ☺️

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knitwitty in reply to Redrosegirlie

Hi again, it's terrible that we have to wait so long between appointments, but it may work in your favour as if what you are experiencing is a hyper swing following an attack on your thyroid you may have swung the other way and will be showing results which are hypo again when you next get your blood tests done. Ask for T4 and T3 to be tested though as I found they will only check these if it looks as though you are hyper not hypo.

That is why I have had to rely on private testing since I was diagnosed, as despite my GP requesting T4 and T3 be tested each time I have had a blood test done the labs have refused to do them, It has pinpointed a potential problem with conversion of T4 to T3 which would not have been noticed had I not had these tests done privately.

I would try and insist that your antibodies are tested if possible ( my GP requested it but the labs refused, so be prepared) I would also ask for ferritin, folate Vit B12 and Vit D to be checked as these can be low if you are hypo.

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Redrosegirlie in reply to knitwitty

Thanks knitwitty.

I would like to see the second GP armed with all the results from private testing however Christmas is near and I may not be able to afford them.

I’ll ask him if he can request as much as poss.

If I am genuinely hypo rather than hyper will started in the Carbimazole show that?

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knitwitty in reply to Redrosegirlie

I'm not sure, but starting the carbimazole will probably make you feel terrible as it will exacerbate the hypo symptoms as it switches off your own production of thyroid hormones ( I think). When your thyroid stops working following treatment with carbimazole you are sometimes put on a regime called block ( that's what the carbimazole does) and replace (you are then given levothyroxine to make up for the hormones you are no longer producing). If at all possible I would not start taking carbimazole until you have definite diagnosis of hyperthyroidism which will probably need to be diagnosed by an endocrinologist and you will need to have antibodies and all hormone levels measured prior to that diagnosis.

Good luck, and do come back and ask more questions on here as there are some really helpful and well informed people on here who generously give their time to help others.

I am glad I did not start treatment with carbimazole because I think I would have been in a terrible state if I had. If you are experiencing a hyper "Hashi" swing the temporary symptoms can be treated with beta blockers temporarily but I think you mentioned that your heart rate was not particularly high.

I hope all goes well with your appointment.

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purple64

I am surprised your GP has said to re test blood in 2/3 months usually in the beginning its every 4weeks or so. I have graves and before I was diagnosed I couldn't sleep, couldn't sit still and was very shaky. I don't know much about hashi but the fact that you are sleeping a lot doesn't sound hyper. If it were me I would book another blood test in a couple of weeks and see what they are. Hope you get it sorted soon.

Redrosegirlie in reply to purple64

Hi Purple, yes I am surprised too which is why I have asked about it. I am a medical professional and I have checked and understood the NICE summary which says check earlier than 3 months and also to check FBC etc prior to initiation of therapy which hasn’t been done.

I’m going to a different GP for a second opinion and hopefully will get the right treatment

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purple64 in reply to Redrosegirlie

Sounds like a good idea as I don't think your first GP understands thyroid problems. Good luck

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Valarian in reply to Redrosegirlie

Four to 6 weeks would be more reasonable - in some cases, your thyroid condition might have resolved itself within that time, and the carbimazole would mean your thyroid would need to work harder to produce what you need.

This is an explanation of the likely causes of being hyper.

thyroiduk.org/tuk/about_the...

It’s really difficult to be sure from symptoms. I did sleep quite a bit when I was first diagnosed, but it was more that I would wear myself out, come home and fall asleep, then be ready to go again...think Duracell bunny ! I recognise the ‘on fire’ bit - I would go around throwing open windows when everyone else was turning the central heating up !

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Redrosegirlie in reply to Valarian

Thanks Valarian. Please see my post from today. It now looks as though I am hypo rather than hyper 😊

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