Any Advice on blood tests results and feeling rubbish

[graff]

I am new and I would like some advise on my daughters behalf. My daughter is 22 and was diagnosed with overactive thyroid September 2017 and Graves disease. The doctor gave my daughter carbimazole 15mg and since 16/07/18 she is down to 5mg a day . She has various things wrong etc at the moment it is weight gain, overeating, sweating and insomnia. The insomnia is the hardest as I think she thinks that the doctor and endocrine doctor dont believe her and how she struggles with sleep.

First blood results from 20/09/17

Serum free t4 level 37.0 pmol/L normal range 10.30-24.50

Serum free t3 level 19.4 pmol/L normal range 3.50-6.50

Serum TSH level 0.01 mlU/L normal range 0.30-5.50

March 2018

free t4 20.4 normal range 10.30-24.50

free t3 7 normal range 3.50-6.50

tsh <0.01

May 2018 Same ranges as above

t4 15.2

t3 3.8

tsh 0.11

July 2018 same ranges as above

t4 15.2

t3 4.9

tsh 3.32

August 2018 same ranges as above

t4 18.9

t3 5.4

tsh 2.46

Thanks

[shaws]

Welcome to our forum and am sorry your daughter has a problem with her thyroid gland - it can come as a shock - and that she has Graves Disease.

Those members who've had similar will respond as soon as they read your post.

Hyperactive and hypothyroid are both sides of the coin and can be disruptive until onto the proper medication.

[graff in reply to shaws]

Thankyou

[Fruitandnutcase]

I found it very difficult to sleep when my Graves was be8ng treated. I was tired all the time too. Mind you I used to sleep whenever I got the chance. I still don’t think that was what was wrong though.

To begin with the palpitations were so strong my pulse woke me up. I could feel it through my stomach. I used to waken with my whole body going boom, boom , boom. Horrible. Like your daughter I was SO hot and was always dripping with sweat.

I have now worked out that I need to sleep in complete darkness. No radio alarm or anything with a bright light. I don’t even like my electric toothbrush charging because it has a little green light. I have total blackout curtains so the room is totally black all night. My husband hates my sleeping regime - I don’t, I love waking up refreshed - so he has moved into the spare room and we get together at about six in the morning.

I found I had to have just the right pillow, the right duvet, I often have a warm magnesium flake and lavender oil bath. sometimes I used to need something to eat - not too much or too little. Same with having something to drink. It took a lot of trial and error and tweaking but I got there in the end and now sleep well. Oh and I never use my iPad / computer before bedtime or read my kindle.

I think it can take a while for your body to get used to the ‘new normal’. I can remember that from when I stopped my meds. I was treated with block and replace so stopping my meds was slightly different for me.

Also when I started taking carbimazole my pharmacist came out to tell me to take high strength vitamin C with my carbimazole so I took 1000mcg slow release vitamin C with zinc for the whole t8me I was taking carb. I felt well on it so I don’t know if it was the vit C that helped. It wouldn’t do her any harm to try it.

I have since gone totally gluten free. I developed inflammatory arthritis and I already had several other anti inflammatory conditions so as an experiment I went GF. I originally intended it Tim be fir three months to see if it had any effect on my thyroid antibodies. It did and so I have now been totally GF for nearly five years. I be been doing my own blood tests and in that time my antibodies and also my CRP have c9me right down so GF is my life now. I also went on a low carb, high fat way if eating. I was given a course of steroids for the arthritis which tipped me int steroid induced T2 diabetes and I knew there had been good results with diabetics using LCHF. I eat carbs but not grain based carbs as they were what spiked my blood sugar and although I eat fat, I’d say it is more that I’m not scared to eat fat, I just wouldn’t want to eat a great layer of fat on a pork chop.

It started when I bought a book about how to reduce your T2 diabetes and then I bought myself a blood sugar machine and did what the book tooda I lost a huge amount of weight just by eliminating the sort of carbs that spiked my blood sugar. I still eat a lot of food but I eat smarter now.

If your daughter has a Fitbit that would show how much sleep she is actually getting. I use mine on the normal setting, the sensitive setting was too sensitive for me and it looked as if I never slept when in fact I did. That way she could see her doctor and endo armed with her Fitbit sleep graph.

[graff in reply to Fruitandnutcase]

she has a Fitbit and has had a sleep monitor from the sleep clinic. They diagnosed insomnia, she is due to go back in October to Guys so i will get some copies of her sleep patterns from her Fitbit. Thankyou for your reply

[SlowDragon Administrator]

She also needs vitamin D, folate, ferritin and B12 levels testing

These are often too low and cause problems in own right or upset Thyroid further

[graff in reply to SlowDragon]

Vitamin D was low before her thyroid came to light, she had blood tests done in March 2018

Serum vitamin D 90 therapeutic target: >80 nmoI/L

Serum folate 8.5 ng/ml range 3.00-13.00ng/mL

Serum ferritin 34.1 ug/L range 20.00-300.00ug/L

Serum B12 392 range 180=1100-00pg/mLr

[SlowDragon Administrator in reply to graff]

So has GP done full iron panel for Anaemia, her ferritin is very low

Folate and B12 pretty low too

What supplements is she currently taking?

Low vitamin D and B vitamins can be linked to insomnia

drgominak.com/sleep/vitamin...

As Fruitandnutcase says, many find strictly gluten free diet helps with Graves and Hashimoto's

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

scdlifestyle.com/2014/08/th...

Low vitamins indicate gut is affected so gluten free may help

[graff in reply to SlowDragon]

Her GP said they are in range, never suggested taking supplements.

[SlowDragon Administrator in reply to graff]

Her ferritin is low enough for GP to do full iron panel.

You can't assume that low ferritin is always low iron.

Ask GP for full iron panel to test for Anaemia

Does she have heavy periods?

Eating liver or liver pate once a week should help improve. But she possibly needs iron infusion or ferrous fumerate supplements to improve

Is she supplementing vitamin D?

Magnesium supplements can help with poor sleep

[graff in reply to SlowDragon]

No supplements and yes she does have heavy periods. She has a appointment with the GP in September so will ask for a full iron panel to test for Anaemia and will start her on vitamin D. Also will look into Magnesium supplements for her too.

[SlowDragon Administrator in reply to graff]

Keep reading posts on here. You will see many have low vitamin levels and/or gluten intolerance

Thyroid and poor gut function go hand in hand

[graff in reply to SlowDragon]

Thank you for your replies and I will keep reading

[Marz]

Were anti-bodies tested for Graves and Hashimotos ? There have been a few cases of late where members were prescribed Carbimazole when in fact they had Hashimotos or both. Swinging from Hyper to Hypo with Hashimotos is quite common too.

[graff in reply to Marz]

I thought she was tested for Hashimotos but I cant find the blood test for it, I noticed in November 2017 that her eye was starting to bulge the hospital tested for Graves when she attended her first appointment in December 2017 but she wasn't given the result . She is on her third prescription for glasses since November 2017! also what do you mean by they can swing for Hyper to Hypo?

[HughH in reply to graff]

What were your daughter's symptoms before her treatment for Graves? It is possible that doctors have got this wrong.

[graff in reply to HughH]

She lost a lot of weight, she was only about 8 and half stone at the time, she was always very thin, hair was falling out lucky she had thick hair. Headaches, heart palpitations and sweats. She suffers with anxiety which was ten times worse. Always hungry and a fast metabolism. The list goes on. She was given antidepressants by the GP and she was sleeping a lot and still does when she does finally get to sleep

[Marz in reply to graff]

If you read posts here about Hashimotos you will see that anti-bodies attack the thyroid which can cause a surge of hormone into the blood stream and produce Hyper symptoms. Once that hormone has been used up there is not enough thyroid hormone circulating and people become Hypo ...

This is why members here always ask for results with ranges - and anti-bodies - just to make sure ...

[graff in reply to Marz]

Thanks for your reply will have a look at some Hashimotos posts, as I have only really looked at over Active thyroid and Graves. You only get very limited info from the GP and even the hospital don't tell you much about it.

[SlowDragon Administrator in reply to graff]

Many of us with Hashimoto's start with hyper phase as thyroid breaks down releasing excess thyroid hormones

It's often misdiagnosed as Graves

Hence so important to test thyroid antibodies

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_...

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

For full Thyroid evaluation you also need TSH, FT4, FT3 plus TPO and TG thyroid antibodies (for Hashimoto's testing but can also be present with a 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 or vitamins

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 money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Gluten free diet helps with both Graves and Hashimoto's

amymyersmd.com/2017/02/3-im...

chriskresser.com/the-gluten...

thyroidpharmacist.com/artic...

scdlifestyle.com/2014/08/th...