Latest blood results, advice appreciated - Thyroid UK

Thyroid UK

137,139 members160,827 posts

Latest blood results, advice appreciated

Fruityflapjack profile image
17 Replies

Hello everyone, I have Graves and Thyroid Eye Disease and have just arrived home from outpatients appointment to discuss TED and where I was also supposed to see an endocrinologist to discuss latest blood results, only to find that he had left saying he did not need to see me. Can't currently find the words to express my frustration! Just wondering if any of you lovely members might be willing to give your opinion on my results

(15/06/2020)

TSH 0.69 (0.1-5.0)

FT3 4.8 (3.5-6.5)

FT4 21.0 (12-23)

Just for background info, I've recently been experiencing hypo symptoms and following a blood test on 15/5/2020 and with advice from endo, I lowered my carbimazole slightly. (Currently taking 5mg for 5 days out of 7). Those results from 15/5/2020 were as follows:

TSH 3.66 (0.1-5.0)

FT3 4.8 (3.5-6.5)

FT4 17.0 (12-23)

Thank you

Written by
Fruityflapjack profile image
Fruityflapjack
To view profiles and participate in discussions please or .
Read more about...
17 Replies
pennyannie profile image
pennyannie

Hey there again Fruityflapjack :

At the risk of sounding like a broken record - have you got positive, medical evidence that you have Graves Disease ?

Secondly I'm sending you a virtual " hug " as I can imagine how upset you must be feeling from todays appointment.

Well your bloods are all in range - and just, if not more important is - how are you feeling ??

Was the TED eye consultant available and how are your eyes now ?

Fruityflapjack profile image
Fruityflapjack in reply to pennyannie

Hi penny annie. Thank you you for the hug. I needed it. I asked about TSI test and it seems I did have one in May last year. The TED specialist looked it up for me and said it was 9.8. Must admit I never asked about a range, but now I know I've had one I can chase it if you think I need it. No idea if that's a high number or not.

As regards the hypo symptoms, I'm feeling so much better. Thank you.

Yes, today has been hard. As I'm sure you know, you are given a score from 1 to 10 dependent on examination results done in the clinic and my score is 2. So on the one hand it's reassuring to know that the inflammation is not that severe and the optic nerve is not compromised, but it's hard to come to terms with the fact that eye muscle surgery is the route for me. I'm not bothered about the surgery so much as the realisation that I have to deal with double vision and hypotropia until the squint team are prepared to operate and I think that'll be months away. It has all been such a knock to my self confidence, but as my granny used to say - 'what doesn't kill you makes you stronger'.

pennyannie profile image
pennyannie in reply to Fruityflapjack

Hey there again

Well I think, but I'm not sure that the cut off for newly diagnosed Graves is 1.3 so I think that is a high number and you're positive for Graves, so commiserations, and snap !!!

Glad you are feeling better in yourself and would suggest your maintain your ferritin, folate, B12 and vitamin D at optimal levels as your metabolism has been running very fast and now slowed down, possibly a little to much and your own ability to break down your food for the benefit of the nutrients needed to keep your core strength strong and solid, possibly compromised.

Your conversion of T4 into T3 has dropped a bit in the second set of results, as your T4 is going further up in the range whilst your T3 has remained static, so improving your vitamins and minerals may help you get a better T3 and it is low T3 that causes the symptoms hypothyroidism, but it is well within range and you might feel a little better if it were a little higher.

In May your conversion ratio was 1 / 3.5 and in June it has gone out a bit to 1 / 4.4 :

Most people seem to function best when the balance between their T3 and T4 is around 1 / 3.5 - 1 / 4.5 with most people having a ratio of somewhere around 1 / 4 T3 to T4 : and to find your ratio you simple divide your T3 into your T4 :

I was extremely self conscious about my eyes, but my swelling and issues only became apparent after the RAI thyroid ablation, and read that this can happen after this particular treatment, but was never told any of the down sides prior to the RAI, except that I may become hypothyroid.

Had I known then what I do now, I certainly would not have gone down this route.

In 2005 I wasn't even given any treatment options, and since the Carbimazole worked well and did the job, just trusted the medics knew best and followed their advice.

I have to say that currently my eyes are not too bad, though have a stock of preservative free eye drops for if and when needed. I've given up on using my contact lenses, and sometimes hide behind large sunglasses but am still very sensitive to high UV sunlight when I hide behind RNIB sunglasses.

Fruityflapjack profile image
Fruityflapjack in reply to pennyannie

Thank you pennyannie. The info about the ratios is really interesting as is the advice about vitamins and minerals. I’ll make sure I keep a check on my levels.

jimh111 profile image
jimh111

These numbers are OK and it can take some time to recover from hyperthyroidism. More urgent is your eye problems. If you are still getting eye problems insist on seeing a TED specialist. It's important that TED is well controlled early on and TSH is not allowed to go high. The muscles around the eye have receptors for TSH that are usually dormant but Graves' antibodies stimulate eye muscles causing problems. This goes away in time but you may need special eye drops or even topical steroids for a while. The steroid option is less likely at the moment as it can affect your resistance to COVID-19.

Fruityflapjack profile image
Fruityflapjack in reply to jimh111

Thank you for your reply. Just seen the top eye specialist in our area today. Think the damage to the muscles has already been done. First noticed double vision in late January. Was offered iv steroids in March. I had MRI and chest xray and then because of COVID19 iv steroids were not an option. In the interveneing months double vision and hypotropia have worsened and I now have occlusion tape over one lens of my glasses so that I can see properly. Swelling has lessened over the last few weeks(I've been really strict with my diet) and doctor doesn't think I would benefit from steroid drops or oral steroids. I think I'll have to head down the squint surgery route at some point when they are sure everything has settled.

jimh111 profile image
jimh111 in reply to Fruityflapjack

Sorry to hear that. Forgot to say selenium supplementation can sometimes reduce antibody levels. It’s a safe and simple option even if success is not guaranteed.

Fruityflapjack profile image
Fruityflapjack in reply to jimh111

Thank you. I'm taking selenium and d3/k2. Also read somewhere on here that celery juice was good for inflammation and have been taking that every morning too and it seems to have helped.

asiatic profile image
asiatic

According to Elaine Moore ( THE expert on all things thyroid ) people like us with Graves and TED usually have blocking as well as stimulating antibodies which can make us hypo on AT meds and going hypo exacerbates TED. If our antibody levels stay high and we are unlikely to go into remission Block and Replace is a good option. Has this been discussed with your Endo ?

Regards your eyes. You say one eye is being occluded. Have you been offered plastic stick on prisms to correct your double vision ? I declined the op mainly because of my age ( I am 75 ) and find the prisms work for me.

jimh111 profile image
jimh111 in reply to asiatic

Blocking TSH antibodies will likely block TSH receptors in the pituitary also leading to a higher TSH. This may be happening to a small extent in this case. This higher TSH will I assume tend to cancel out the effect of the blocking antibodies.

I don’t think there is a need for block and replace because the carbimazole dose is low, so no need to block. I’d just stop the carbimazole.

Pure speculation. If there are blocking antibodies they will presumably block the effect of TSH stimulating deiodinase which is currently compensated by a higher TSH. If you supply levothyroxine the TSH will be brought down and so deiodinase reduced leading to insufficient T3, particularly in tissues that rely on deiodinase for local T3 regulation. So, I’d see how it goes with just no carbimazole. Sorry if I’ve lost everyone here.

(I think the occlusion is some tape on the glasses not in the eye).

asiatic profile image
asiatic in reply to jimh111

Yes you have lost me. My fault not yours ! I am interested though as it is pertinent to my situation so I will try to understand it tomorrow and get back with any questions.

Yes the tape is on the glasses NOT the eye though sometimes I have felt tempted !

jimh111 profile image
jimh111 in reply to asiatic

Don't bother trying to follow it, it is very advanced. Apart from your eye issues what other symptoms (if any) do you have? If you seem hypo cut out your carbimazole, if you are OK stay as you are.

asiatic profile image
asiatic in reply to jimh111

If only it were that simple jimh !

5 years ago I tried various Carb doses and could have TSH at 38 and fT4 below range. Did much better on B and R. 10mg Carb and 50mcg. Levo. Then during lockdown felt hypo symptoms returning. Reduced to 7.5 then 5mg. Carb. Still have a few symptoms that could be either hypo or hyper so waiting till I can get a blood sample done to see where I am before doing a bit of fine tuning.

Fruityflapjack profile image
Fruityflapjack in reply to jimh111

Yep, you’ve lost me - I’m a bear of very little brain! Made me chuckle though, so thank you for that 😁

Fruityflapjack profile image
Fruityflapjack

Hi asiatic. Thank you for your response. No, block and replace hasn't been discussed yet. Think the plan is to stay on the carbimazole until the end of 2020 and then take it from there. Perhaps it's a conversation for next time. Yes, my TED really kicked on when my meds made me hypo. As for a Fresnel prism - I've tried that, it was fine initially but then my double vision deteriorated and this really seems to be my only option at the moment.

asiatic profile image
asiatic

Sorry the prism didn't work for you. I have needed 6 changes over the last 4 years. My eyes are now in recovery stage and the prism has gone down from a 35 to a 12. I don't expect much improvement now but I have got used to living with the double vision. I find bright lights and changes in my colour vision more troublesome.

As Jimh suggests titrating down is probably best at the moment. I just wanted to make you aware of B and R as an option if you find yourself going hypo because even with my eyes in recovery they can still flare up again if I go even slightly hypo.

jimh111 profile image
jimh111 in reply to asiatic

I should also mention that if a patient has unstable hormone levels the current policy is to use block and replace. This is because they are not able to offer frequent appointments and blood testing during the COVID-19 crisis.

You may also like...

Latest blood test results, any advice appreciated.

my latest blood test results, I would very much appreciate any comments. I do know that my TSH is...

Latest Blood test results advice appreciated

These are by blood test results on metavive 11 I was taking three tablets a day obviously not enough

Advice on latest blood results

mg 7 weeks ago. My new blood results are: TSH level 1.69 (range 0.55- 4.78 mU/L) T4 13.5 (range...

Latest blood results...any help appreciated

normal (in range). Here's what he requested and results: TSH: 4.0. (0.35-5.5) Serum Ferritin 23....

Latest nhs GP blood test results - any help or advice appreciated

MEDICHECKS TSH 1.46 (0.27-4.2) FT3 4.97 (3.1-6.8) FT4 13.6 (12-22) 19.06.20 MEDICHECKS TSH 1.88...