Still feeling hyper...help!

Hi. I've been diagnosed with graves 3 years ago. Off the block and replace for 9 months. Overall been feeling good but every month or so I have a massive dip and all the usual symptoms come back. Anxiety, joint pain, flakiness, dry skin, memory loss, sore tired eyes etc. strangely when this happens and I get bloods investigated the thyroid appears normal so I'm always left feeling a little isolated in what's going on. Just got a new Endo and he instructed full bloods. Results are : TSH 1.7, free T3 13.1, free T4 4.6. Vitamin D 14, b12 is 247. So I'm going to see my Endo on Monday but I want to see what your opinions were on the bloods as they stood right now as I feel like I'm having the same conversation each visit. This is the first time on testing b12 and vit d. My previous Endo never asked for those. I don't understand how the vitamin deficiency could have such an impact on my mental state. I'm only anxious when I feel like my thyroid is going a bit haywire otherwise it's ok. At the moment real bad palpitations.

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  • Hi, Your vitamin D and Vitamin B12 results are not good at all. These can result in you having symptoms as well as your thyroid. Do you happen to have the ranges for your tests. They are usually in brackets after the results.

    Your B12 should be above 600 and dependent on the range, towards the top.

    This is from the Vitamin D Council and I'll give you the link for you to read:

    The Vitamin D Council suggests that a level of 50 ng/ml is the ideal level to aim for. This is why the Council recommends that adults take 5,000 IU/day of vitamin D supplement in order to reach and stay at this level.

    I think your GP will have to give you Vitamin D supplements. He might not give you B12 as it is probably 'within range' so buy methylcobalamin (not cyanocobalamin) B12 vitamins, sublingual and start at 5,000 daily and then 1,000. We cannot overdose as excess of B12 is excreted.

    vitamindcouncil.org/about-v...

    Both of these vitamins are hormones and have serious consequences for us if not on the optimum level.

    This is a similar post which may be helpful.

    healthunlocked.com/thyroidu...

  • Hi. I really appreciate all of your advice, my results are as follows:

    TSH 1.71 (0.20-6.00)

    T4 13.1 (10-29)

    T3 4.6 3.50-6)

    Vitamin d 14 (75-150nmol)

    Vitamin b12 247 (180-910)

    Serum folate 7.0 (5.40-24.00)

    With regards to having t3 and t4 tests done. I have to fight continuously with the NHS to have those done they are of the opinion that if the tsh is normal they won't test for those. To clarify I pay privately to see the Endo and NHS for bloodwork. I feel a little weight has been lifted knowing that their is a possibility that the reason I have been going downhill at times is due to the vitamin deficiency. It's annoying to think that perhaps these times could have been avoided if my previous Endo would have been a little more thorough. Paying privately it would appear does not always pay.

  • Agree with Shaws about the VitD and B12. You need both of those to be well up for your thyroid to function well. If you click on my name and reaped my blurb there is a link to a little YouTube vid that explains why.

    I have Graves and am in remission, you'll see that too on my blurb. I take Vit D daily, I use a spray and I use sublingual Methylcobalamin 5000mcg. I also take 1000mcg Vit C - my pharmacist told me to do it when I started on Carbimazole and ive just done it ever since. Also take CoQ10 and a daily multivit/ mineral and try to eat healthily - am working hard on being GF at the moment.

    I think it takes quite a while for your body to feel normal when you have been hyper. I'm getting palps at the moment but not the hyper ones I had, these seem to be coming because my pulse is slow. I Have a feeling im going from Graves to being hypo - I became hypo for a while when I was left on carb for too long before the levo was added in and every time I needed an increase in my levo I used to get palpitations, at first I thought it was because I was becoming hyper again but a wise person on here said some hypo and hyper symptoms can be similar. Is your heart racing when you feel them like it did before you were treated? I know when I get my palps now my heartbeat will be anything from 55 up to the low sixties ( I use a pulse meter so I know it is accurate) they are different from the horrible racing heart hyper palps I used to get before I was diagnosed.

    It sounds good that your new endo has requested full bloods and that you have also had T3 plus vits D and B12 done. That's a lot more than most people have had. I have to pay privately if I want FT3 and Vit D done. If you find that your new endo is good when you meet him be sure to send his details to Louise at TUK for her list of good endos. Hopefully you will feel better soon, keep in touch and let us know how you get on 😊

  • 4.6 seems VERY high - if it is measured in ng/dL (rather than the pmol/L we see in the UK). I suspect a USA-based test. william21, please post the actual ranges and units for your tests so that we can be clear.

    That number goes well with a Free T3 which is also somewhere around double the top of range. (Although UK and USA measure FT3 in different units, pg/mL and pmol/L, the numbers are actually very close with UK numbers only being around 10% higher.)

    Louise does not keep non-UK endos on her list - if william21 is indeed not in the UK.

  • Rod, William says above:-

    To clarify I pay privately to see the Endo and NHS for bloodwork.

  • Thanks shaws. Makes sense now. :-)

  • I take it you pay for bloods the private Endo Shaws? It was my private Endo who recommended that. But it is a pain especially when the NHS don't see the point in testing t3 and t4. It even goes as far as the GP making the request for those on the blood form and the lab still won't do them unless absolutely pushed by them. It's sad that so many people could be mis disgnosed as gps/labs think that TSH is all that should be tested.

  • You're right William. If it is a private Endo you pay for tests. You can also get them yourself and we have a couple of labs who do them for you, personally. You can then post your results for comments from members.

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

    I think most use Blue Horizon - a pin prick test. Horizon gives a discount if you quote a number I think its TUK10 but check.

  • Hi all. I attended my Endo's appointment this evening but still dont feel any further on. He's more than happy with my TSH, t3 and t4 results. He also goes onto say that the deficiency in my vitamin d is unlikely to be causing the problems I have. He is going to ensure I take the correct supplement for that anyhow. I asked about borderline vitamin b12 but he disagreed that this could be having any effect on my anxious state, palpitations etc. What are your thoughts in that? I've researched a little and can see that if you don't enough b12 with an overactive thyroid it can indeed have an effect. Confused?? Oh yes. I have decided to get some b12 supplements anyway to see if they make a difference can anyone recommend correct dosage? . In the meantime, he's doing more blood tests to see if it's hormonal And also wants to investigate the palpitations so 24hour ecg tape.

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