Blood wizards - what do you make of my latest results (Graves)?

[CanIHaveYourJuiceBox]

Hi all. I had bloods after I complained of vertigo. I was on 100mg of PTU daily but stopped taking it 10 days ago due to dizziness being a side effect. I have been asked to be put back on carbimazole. I’ve been diagnosed with BPPV so at least I know why I have vertigo and residual dizziness.

I am putting weight on like nobody’s business even though I am walking miles a day and in a calorie deficit. What do you make of my bloods? I feel that at 11.3, my T4 is too low. Endo wants to put me on 10mg of carb but I’d prefer 5mg! It’s been a week and still waiting for my prescription to change so might end up with higher T4 levels after all.

I also think that my B12 and folate are low too. I’m a vet nurse so can read and interpret blood results.

[jsy_girl]

Can’t comment on the carb dose although I’d agree your fT4 level looks low. Do you have Ft3?

Looks like you have super low ferritin, b12 and folate levels. Have you had vitamin d tested too? Are you taking any supplements? Have you been tested for pernicious anaemia given that you have graves?

[CanIHaveYourJuiceBox in reply to jsy_girl]

I have Vitamin D deficiency which they fob me off with some tablets to take for 8 weeks.

I’m currently fighting the GP to be tested for pernicious anaemia.

[SlowDragon Administrator]

I would suspect vertigo is linked to extremely low B12 and low folate

Ferritin also low

No Vitamin D?

How long have you been on PTU

Have you definitely had Graves’ disease confirmed by high TSI or Trab antibodies

Ft4 is low

Obviously need Ft3 tested

Ferritin also low

All points to being over medicated/hypo

Insist on TSH, Ft4 and Ft3 tested together

Plus TPO and TG thyroid antibodies if not been tested yet

[CanIHaveYourJuiceBox in reply to SlowDragon]

Hi. I had Graves confirmed by Trab in 2019. I don’t have the reference range but the result was 91 u/l (endo said anything over 1.6 confirmed Graves). Trab haven’t been checked since. I have asked multiple times for it to be rechecked but no joy.

My TPO result was 621iu/ml (ref range 1-10) in April 2019. Asked for that to be checked multiple times too.

I have a Vitamin D deficiency (was undetectable at one point). I don’t have the reference range but in November they were at 37. I don’t have access to my endo bloods annoyingly. GP didn’t check them this time even though I asked. Sensing a theme here ...

I’ve been on PTU since November but to be totally honest with you , it tastes horrible so I started being adverse to taking it. It has been 9 days since I took PTU.

I am feeling like I’m being over medicated but not being listened to. I’ve been saying for almost a year now that I’d prefer my T4 to be in and around the 17 mark , not 11.3! I have also asked to be checked for Hashimoto’s too but again no joy.

[SlowDragon Administrator in reply to CanIHaveYourJuiceBox]

Well you can have slightly raised TPO or TG antibodies with Graves’ disease

But high TPO or TG antibodies tends to confirm Hashimoto’s

TPO at 621 seems pretty high

Have you ever had thyroid ultrasound scan done?

You can have Hashimoto’s and Graves’ disease at the same time. Treatment is usually block (with Carbimazole or PTU) and replace with levothyroxine

Suggest you ask about “block and replace “

Vitamins need to be optimal

Vitamin D should be tested twice year. You will need to test yourself. NHS only tests once every 2 years

You will almost certainly need to self supplement vitamin D continuously to maintain GOOD vitamin D level

NHS rarely prescribes unless under 50nmol

Want vitamin D at least around 80nmol and around 100nmol maybe better

Likely to need to self supplement continuously to improve and maintain low B12/folate too

Also get full iron panel test for anaemia to see if iron is also low

[CanIHaveYourJuiceBox in reply to SlowDragon]

I had an ultrasound done as I had a goitre. It also confirmed Graves’ disease. I have no doubt about having Graves. If I stop taking my meds , symptoms usually come back within a couple of weeks (protested against too high a dose last year and stopped taking it. It was the only way the endo would listen).

I am going to ask to be checked for Hashimoto’s at my next endo appointment this month.

I get my vitamin d checked at every endo appointment. Pre Covid that was every three months, but I’ve only had one appointment this year.

I have sent a message to my GP demanding a pernicious anaemia antibody test so let’s see how that goes ! I’ve also ordered a free b12 test from medichecks.

[NIKEGIRL]

Hi. You’re having a really tough time. You’re right the PTU is absolutely disgusting and affects your taste buds for hours. Keep pushing. How do I feel for not taking any thyroid meds for 7-9 days?

[helvella Administrator Thyroid UK in reply to NIKEGIRL]

For interest alone:

A bitter taste in the mouth: The role of 6-n-propylthiouracil taster status and sex in food disgust sensitivity

The substance 6-n-propylthiouracil (PROP) tastes bitter to some people but is tasteless to others. An individual's PROP taster status is physiologically determined. In the existing body of literature, there is some disagreement concerning sex differences in PROP taster status. Some studies have reported that females are more sensitive to PROP, while others did not find this effect.

sciencedirect.com/science/a...

[NIKEGIRL in reply to helvella]

Hi. Thank you for the article and the time to think of me. Got a bit lost but got some of it. Carbimazole tastes sweet but PTU is like taking poison. It taints your mouth for hours. My experience is that it’s not bitter but more like poison. It’s a very potent taste like I don’t even let the tablet touch my mouth but the fluid I drink it with turns to poison as well and that taste lasts for hours. Oh well. I need the drug and it’s a million times better for me than carbimazole, so big girl pants required and get on with it. I hope this finds you well. Kindest regards always NIKEGIRL

[CanIHaveYourJuiceBox in reply to helvella]

That’s so interesting! To me it feels like I’ve got something incredibly bitter in my mouth. It hurts my tongue and affects my taste buds for hours after. I usually have to take it with about 250ml of liquid just to make it bearable!

[Shinbone]

Hello. I have had graves since 2016 and am in remission now. Please take my advice and send a message to Elaine Moore via her website, elaine-moore.com It is an amazing free resource. Her knowledge of graves is quite astonishing. She saved my life and has given me a quality of life I could never have imagined 5 years ago. I wish you the very best on your journey. Take care.

[Cavapoochonowner]

Hello, I have graves disease and am currently starting my 2nd lot of block and replace(40mg carbimazole and currently 50mcg levothyroxine per day).My endo said he wanted mt t4 levels towards the top of range for optimum treatment.The range for me is 10- 18.7 and I do feel well at this.I had a blood test on 22nd Feb and I'm still awaiting a call from my endocrinologist to increase my levothyroxine.I feel unwell at the moment and I have telephoned to ask but I'm sitting by the phone waiting.I ended up on 100mcg levo last time so I've been tempted to increase it myself but I don't want to mess anything up.I can't see my bloods online to check as they were requested by the hospital.It's so frustrating isn't it?I feel for you.

[CanIHaveYourJuiceBox in reply to Cavapoochonowner]

It sounds like your endo is at least looking at your numbers ! I’m glad you’re being kept in the higher range. Mine seems to want to get rid of my ft4 altogether. I can’t believe that they are happy with my ft4 of 11.3 when I haven’t taken PTU in 10 days. I’ve told them I’m not happy with that result and won’t be taking 10mg of carbimazole.

Good luck to you. I hope they give you your blood results

[Cavapoochonowner in reply to CanIHaveYourJuiceBox]

Yes, you just have to be firm sometimes.My ft4 trippled in 3 weeks when I stopped carbimazole so it does look like your ft4 needs to come up quite a way before you need to take carbimazole again.They can always keep an eye on it with blood tests can't they?Best wishes to you.

[CanIHaveYourJuiceBox]

Update - GP has written to my endo with my vitamin b results and has asked them to check me for pernicious anaemia. Pass the book!

[helvella Administrator Thyroid UK in reply to CanIHaveYourJuiceBox]

In which case, have a look over at the Pernicious Anaemia Society forum:

healthunlocked.com/pasoc

And their website.

[NIKEGIRL]

Hi. How r u getting on? I write because maybe your experience with low T4 might help me. I went through a bad patch 3 weeks ago. It was so bad I stopped taking the PTU. 5 weeks ago my T4 was 11 range 10-22 and T3 was 12.3. I was asked to take 200mg of PTU for 4 weeks. After two weeks I was having suicidal thoughts. I suspect my T4 was way under. I stopped the PTU for a week and felt better so started again. After 10 days totally depressed. How did u feel when your T4 was 11.3. I should have gone to the dr and asked for bloods but it was the last place I wanted to go to.

[CanIHaveYourJuiceBox in reply to NIKEGIRL]

Hey. I ended up swapping to 20mg carbimazole and 75mg levothyroxine, which I admit I occasionally forget to take (as it should be taken on an empty stomach and I end up forgetting and eat !). My T4 as of this week is 15, tsh has comeUp slightly to 0.03, still trab positive.

If you feel hypo , push your endocrinologist and hopefully they’ll listen. Let me know how you get on.