Newbie here! Please help!

[Sappy95]

I am very new to this… looking for some advice please. I went to the doctors with hair loss, unintentional weight loss (2 stone), a fast heart rate and a skin rash. On closer inspection the doctor said there was clear evidence of alopecia, a clear goitre and took my heart rate at 160-170. He took my bloods and said TPO >1300…. I have no clue what this even means it was never explained to me?! He referred me to the endocrinology department and sent an urgent advice and guidance to start on carbimazole - this was 3 weeks ago and have not heard anything today until a letter from hospital with a video consultation in 2 weeks. Does this mean it’s not as serious as first thought? I feel completely in the dark and no one has explained anything to me. I don’t know if to be worried or what?! Sorry for the long post/rant !!!

[Anthea55]

Hi Sappy, it looks like you have an overactive thyroid - called 'Hyperthyroid' as compared with an underactive thyroid called 'Hypothyroid'.

A good place to learn about the thyroid is the ThyroidUK website at thyroiduk.org/ On that first page you will see a heading 'If you are hyperthyroid' so explore that.

Others will come along and give you more help.

Best wishes.

[PurpleNails Administrator]

Welcome to forum.

Have you started on carbimazole? Any other medication eg propranolol, that can help with symtoms as a temporary measure?

What else was tested?

Often the TSH (thyroid stimulating hormone) is tested and if this is low the FT4 free thyroxine & FT3 free triiodothyronine are high.

TPO antibodies are Thyroid Peroxidase (TPO) antibodies. There is usually a range eg 0 - 34 or <34 for example. yours are very high as well above the & norm & likely a test limit.

Antibodies show a Autoimmune condition is presented. 1 condition can start with hyper then as immune system destroys thyroid you become under-active. (Called autoimmune Thyroiditis or Hashimoto’s). The other causes prolonged hyper which need medication. This is called Graves.

TPO & Thyroglobulin antibodies (TgAb) are often tested and common with Hashis. (Underactive) but can also be present with Graves.

If you are given carbimazole it’s very important either Thyroid stimulating immunoglobulin (TSI) - Or TSH receptor antibodies (TRab) are tested which are accepted as evidence of Graves’ disease. (Continuous hyper). Doctors do not alway check and treat all low TSH as hyperthyroid without checking cause.

Also important to test folate, ferritin, vitamin D and B12.

Video appointment are the norm right now, they won’t be able to physically examine you, but they can speak to you & start or adjust any medication. Ideally a full set of blood test can be done before your appointment and the next set can be arranged. Initially you should be tested around 6 weekly. (Earlier if new or worsening symptoms appear. I often found Doctors don’t really want to discuss your symptoms, especially in any detail, or go over your treatment options. They prefer to ask a few specific questions & then go by blood test results, they often sent me information leaflets, saying all my question will be answered in this, at which point I’d consult this forum. In a way video appointment were a better use of my time too.

First step get a hold of all your previous blood test results, see what has & hasn’t been tested.

You can obtain printouts of your blood test results via practice reception (don’t ask doctor) or arrange online access for GP records of available, which is extremely useful.

Don’t accept verbal or hand scribbled notes you need a printed copy with ranges (ranges vary between labs so essential). They shouldn’t ask why but if they do try to resist just say they are for your records. You are legally entitled to them.

Any existing medical condition eg Asthma? Can’t be given propranolol.

Any stomach problems? gluten intolerance common issues and lowers nutrients?

Any eye issues, can be common with Graves?

[SlowDragon Administrator]

You are legally entitled to printed copies of your blood test results and ranges.

The best way to get access to current and historic blood test results is to register for online access to your medical record and blood test results

UK GP practices are supposed to offer everyone online access for blood test results. Ring and ask if this is available and apply to do so if possible, if it is you may need "enhanced access" to see blood results.

Link re access

healthunlocked.com/thyroidu...

In reality many GP surgeries do not have blood test results online yet

Alternatively ring receptionist and request printed copies of results. Allow couple of days and then go and pick up.

Important to see exactly what has been tested and equally important what hasn’t been tested yet

As PurpleNails said, it’s important that GP or endocrinologist test TSI air Trab antibodies to confirm Graves’ disease (autoimmune hyperthyroid)

Hashimoto’s (autoimmune hypothyroid) frequently starts with transient hyperthyroid type symptoms and results…..but is not true hyperthyroidism. Early stage Hashimoto’s, as thyroid is attacked, large levels of thyroid hormones can be released from thyroid as cells break down (often referred to as Hashimoto’s flare) ……after each flare thyroid becomes a little more damaged and more hypothyroid

Important to regularly retest vitamin D, folate, ferritin and B12 too

Have you had these tested

Come back with new post once you get results from GP

Have you started on Carbimazole and if yes how much

Bloods should be retested fairly frequently, especially early on

Link about thyroid blood tests

thyroiduk.org/getting-a-dia...

List of hypothyroid symptoms

thyroiduk.org/if-you-are-un...

Very high TPO antibodies usually suggests Hashimoto’s rather than Graves…..but you can actually have both Hashimoto’s and Graves’ disease at same time

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Graves Disease antibodies test

medichecks.com/products/tsh...

[slidingonamoonbeam]

Hi You can't wait two weeks for appointment,You could have a stroke or heart attack. Make an urgent appointment with your GP and get a script for Carbimazole and start taking it ASAP. They usually put you on a high dose to begin with and then slowly lower the dose according to your blood tests.For the first year I had blood tests every 6 weeks. You need to also have regular blood tests to monitor your white cell count as they can be affected.I take a herb called bugleweed which will get you into range a lot faster,although I can't tell my Endo as he doesn't want me to take it.After going for almost a year and still being out of range I started taking Acetyl l carnitine and bugelweed and very very quickly was back in range.Also research as much as possible.I started reading a book called Advances in Graves Disease and Other Hyperthyroid Disorders which is incredibly informative.Best wishes