Jumping from hyper to hypo on a weekly basis. - Thyroid UK

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Jumping from hyper to hypo on a weekly basis.

Mcj68 profile image
9 Replies

Hi this is the first time I have posted here and was wondering if there is anyone else who jumps between both hypo and hyper sometimes on a weekly basis. This has been going now for 2 years. I have awful symptons at both ends of the spectrum but would say that now the hypo is more common and more severe than the hyper yet it was the hyper that landed me in A&E and which lead to a diagnosis of thyroid problems. I have been waiting to see a endo for 4+ months and am having a scan on Monday as my thyroid is enlarged and painful. Has anyone had a diagnosis other than autoimmune with both periods of hyper and hypo and extreme symptoms of both yet they don't have an autoimmune?

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9 Replies
shaws profile image
shawsAdministrator

You could have a condition called Autoimmune Thyroid Disease which is commonly called Hashimoto's. So I will give you a couple of links. If you test positive for antibodies (these attack the thyroid gland so they wax and wane, meaning sometimes you feel hyper) the doctor should prescribe levothyroxine despite the TSH not meeting their criteria.

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

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

Blood tests should always be the earliest possible, fasting, and allow 24 hours gap between thyroid hormones (which should be taken on an empty stomach with one full glass of water and wait about an hour before eating).

Always get a print-out of your results with the ranges (ranges are important for members to comment) as labs differ.

Mcj68 profile image
Mcj68 in reply toshaws

Thank you. I am going to ask for a copy of the blood tests that have been done over the past 4 months. All I know is that they were high, then within range , then low, then high again now low but rising. It has been a real rollercoaster both mentally and physically. They have put it down to uncontrolled thyroid disease and signed me out of work which is causing financial stress. I Just want to get my life back.

Michelle

Clutter profile image
Clutter

Mcj68,

For several months my symptoms were hyper but I then began spiralling between hyper and hypo more or less on a daily basis. My thyroid levels were unequivocally euthyroid (normal) but my thyroid peroxidase antibodies were elevated which meant I had autoimmune thyroiditis (Hashimoto's).

There is no cure for Hashimoto's which causes 90% of hypothyroidism. Treatment is for the low thyroid levels it causes. Many people have found that 100% gluten-free diet is helpful in reducing Hashi flares, symptoms and eventually antibodies.

chriskresser.com/the-gluten...

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

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

Mcj68 profile image
Mcj68 in reply toClutter

Thank you for your response . My GP said she has tested for antibodies but said they "were fine" going to ask her for a copy of the results as I don't know if she checked thyroid peroxidase antibodies. When you were jumping between the two what medication did you have and what medication are you on now.

Michelle

Clutter profile image
Clutter in reply toMcj68

Mcj68,

No medication because thyroid levels were euthyroid. It's hard to see what medication would have helped because I was neither hyper nor hypo although symptoms were.

I was undergoing investigation for a suspicious nodule which turned out to be malignant so I had a thyroidectomy 9 months later. Symptoms improved as soon as the target thyroid was removed.

Mcj68 profile image
Mcj68 in reply toClutter

Thank you. I am sorry to hear that. I am glad you are on the mend. While my bloods and symptons are showing the fluctuations the cause is undetermined. I am due to have a scan on Monday so maybe that will assist with the diagnoses.

Michelle

Clutter profile image
Clutter in reply toMcj68

Mcj68,

Fluctuations are usually caused by autoimmune thyroiditis (Hashimoto's). Some patients have negative thyroid peroxidase antibodies but positive thyroglobulin antibodies. Thyroglobulin antibodies are rarely measured in primary care. Some patients are sero negative but an ultrasound scan may show typical Hashi damage to the gland and diagnosis may be made that way.

Mcj68 profile image
Mcj68

Thanks hopefully the results of the scan will help. Feel like I'm going mad.

Michellle

SlowDragon profile image
SlowDragonAdministrator

There are two sorts of thyroid antibodies: TPO Ab and TG Ab. (Thyroid peroxidase and thyroglobulin)

BOTH need checking, if either, or both antibodies are high this means autoimmune thyroid - called Hashimoto's the most common cause in UK of being hypo.

TPO is rarely checked and TG almost never checked. More common to have high TPO or, high TPO AND high TG, but negative TPO and raised TG is possible, though rarer. Often gets undiagnosed if TG not tested.

Also you can still have Hashimoto's even if antibodies are low, in this case your scan should show if it is Hashimoto's- Thyroid looks granula apparently

ALWAYS Make sure you get the actual figures from tests (including ranges - figures in brackets). You are entitled to copies of your own results. When you get results suggest you make a new post on here and members can offer advice on results

Common to be low in certain vitamins when hypo, especially with Hashimoto's as it is interconnected with gut issues. ask GP to check levels of vitamin d, b12, folate and ferratin. These all need to at good (not just average) levels for thyroid hormones (our own or replacement ones) to work in our cells

If you can not get GP to do these tests, then like many of us, you can get them done privately

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

Blue Horizon - Thyroid plus eleven tests all these.

Medichecks also does same 11

Usual advice on ALL thyroid tests, is to do early in morning, ideally before 9am. No food or drink beforehand (other than water) If you are taking Levo, then don't take it in 24 hours before (take straight after). This way your tests are always consistent, and it will show highest TSH, and as this is mainly all the medics decide dose on, best idea is to keep result as high as possible

If you have Hashimoto's then you may find adopting 100% gluten free diet can really help reduce symptoms, and lower antibodies slowly over time too

You will see, time and time again on here lots of information and advice about importance of good levels of B12, folate, ferritin and vitamin D, low stomach acid, leaky gut and gluten connection to autoimmune Hashimoto's

thyroidpharmacist.com

chriskresser.com/the-gluten...

hypothyroidmom.com/92-of-ha...

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