latest results help needed

[Allie20]

Hi these are my latest results feeling totally crap again thought it was because back at work full time.

Had bloods done on 2nd Sept when they came back had only done TSH

TSH 7.5mu/L [0.27-4.2]

GP called and said she wanted them all done again so 1 week later: 9th September

TSH 17.6mu/L [0,27-4.2]

T3 3.3 pmol/L [3.1-6.8]

T4 5.0 pmol/L ]12-22.0]

She has now reduced my PTU back to 100mgs daily. It seems each time they increase meds my body does not like it.

Symptoms now I’m very cold again, sloes of feet peeling , heart rate dropped, very tired again and knee joints really aching.

Please share knowledge as don’t see Endo until mid November.

Thanks in advance for your time knowledge and understanding and willingness to share 🙏😊

[SlowDragon Administrator]

You’re now very hypothyroid insist GP test vitamin D, folate, ferritin and B12

What vitamin supplements are you currently taking

If not already on strictly gluten free diet, request coeliac blood test done BEFORE trialing gluten free diet

[Allie20 in reply to SlowDragon]

Thankyou SlowDragon for your response.

I have had all vits checked and only one highlighted was B12 deficient so had injections over 2 weeks GP will not test me again until end of November . Was tested for PA but came back negative. I believe that this can be the case for at least 50% of people so need to have another test in November to see where levels are then and to see if I need regular injections . Reluctant to start any vits as want to see what’s happening with B12 first.

I have been tested for coeliac and that was negative.

GP has reduced PTU meds again to 100mgs daily. I feel like a yo-yo up then down and repeat all again. I spear to be sensitive to thyroid meds as when they try to increase it’s not good for me. I am trying to get thyroid scan before I see Endo in mid November to try and move things along before seeing he/she.

Gutted as the 1 GP who has listened (not fitting me into ranges but how I’m feeling) and has been helpful to me is now moving on. Don’t have much faith in the others as they don’t listen.

Thankyou for sharing ur knowledge and understanding very much appreciated 🙏

[SlowDragon Administrator in reply to Allie20]

So B12 likely low BECAUSE you are currently hypothyroid

Unless you are vegetarian or vegan?

Did you have several loading doses of B12 over 1-3 weeks?

What were actual vitamin D, ferritin, B12 and folate results?

As you are now having B12 injections it’s recommended also to supplement a good quality daily vitamin B complex, one with folate in (not folic acid).

This can help keep all B vitamins in balance and will help maintain B12 levels between injections too

Some people find they need B12 injections more frequently than every 3 months….you can request injections more frequently if necessary

supplementing a good quality daily vitamin B complex, one with folate in (not folic acid) 

This can help keep all B vitamins in balance and will help improve B12 levels too

Difference between folate and folic acid 

chriskresser.com/folate-vs-...

B vitamins best taken after breakfast

Thorne Basic B recommended vitamin B complex that contains folate, but they are large capsules. (You can tip powder out if can’t swallow capsule) 

IMPORTANT......If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 7 days before ALL BLOOD TESTS , as biotin can falsely affect test results

endo.confex.com/endo/2016en...

endocrinenews.endocrine.org...

In week before blood test, when you stop vitamin B complex, you might want to consider taking a separate methyl folate supplement

[Allie20 in reply to SlowDragon]

Thanks SlowDragon,

I’m not a vegetarian.

My B12 was 110 ng/L [180-1,000]

Serum folate 5ng/ml[>4]

serum 25-hydroxy vitamin D3 level (XaEQa) 99.2 nmol/L

Ferritin 50 ng/ml [10-300]

These were all done end of April.

Had B12 injections every 2 days for 2 weeks then had a great holiday in the Caribbean lying in the lovely sunshine for 2 weeks 🌞 this did me the world of good. 😊

I have had no more B12 injections since end of May. They did give me a bit more energy though.

Any recommendation regarding the vitamins as when asked GP wasn’t very helpful. And I don’t have a clue. Maybe I need to see a nutritionist?

Thanks again for sharing ur knowledge and understanding it is such a help when GP’s are mainly clueless. 🙏

[pennyannie]

Hey there again Allie :

The AT drug, whether Carbimazole or PTU simply blocks your own thyroid hormone production - a bit like a dam blocks water flow.

You might see it more as a bit like being put on automatic pilot -

while you wait for this endo appointment -

but the AT drug does need titrating up and down as your T3 and T4 levels drop down into range - all the AT drug does is buy you time :

However as you are T3 dominant your T3 and T4 will not fall down into the ranges in the usual, accepted way, and you will likely do better on Block and Replace as mentioned in previous posts.

In this way the AT drug fully blocks your own thyroid hormone production BUT you also take some T4 - Levothyroxine thyroid hormone to keep your T4 from falling too far through the range causing additional horrible symptoms.

Whether hyperthyroid or hypothyroid you will not be able to metabolise key nutrients from your food and the consequence of this is that your core strength vitamins and minerals will fall through their ranges compounding your health issues.

You need to keep ferritin, folate, B12 and vitamin D optimal during this first phase of the disease to help support you through.

There is no point thinking you are proving any point by not doing this - mainstream medical are not taught about vitamins and minerals - and it's best to be ' on top of your health ' rather than wait until your levels are on the floor before being picked up on the NHS blood test.

I see you have now asked to the list of patient to patient recommended specialist - Thyroid uk thyroiduk.org also show a list of both hypo and hyper symptoms and you might like to take a look at this on their website as it does all get a bit confusing as we can end up not knowing how we feel anymore - and true to form - of course - there are symptoms that sit in both camps !

Did you get to have a holiday ?

[Allie20 in reply to pennyannie]

Hi PennieAnnie,

Thanks again for sharing your knowledge and understanding it’s so helpful and important for me and many others to try and gain a understanding of what is going on.

My B12 was 110 ng/L [180-1,000]

Serum folate 5ng/ml[>4]

serum 25-hydroxy vitamin D3 level (XaEQa) 99.2 nmol/ L

Ferritin 50 ng/ml [10-300]

These were all done end of April.

GP is now talking about block and replace but think she will wait until I see Endo for them to make recommendations.

My concerns with taking Levothyroxine is losing my bone density as I believe calcium supplements interfere with absorbing what else is needed

Yes I had a Fantastic holiday in the Caribbean end of May -June lying in glorious sunshine seems so long ago. Off to Lanzarote in 3 weeks time for some more relaxation can’t wait. Will be planing next get away for February sometime as need to have something to look forward too

Any advice about good quality vitamins is greatfully received as they appear equally complex and some very pricy too can GP give prescription for these?

Thank you again for sharing with me 🙏

[pennyannie in reply to Allie20]

I think your fear of taking T4 - Levothyroxine is unfounded when your whole body is in turmoil with Graves Disease, the anti thyroid drugs and low vitamins and minerals.

If you go into the section on the top right hand side of this page you should see a subsection entitled vitamins and minerals and most posts from SDragon and SSusie offer detailed advise :

You have advise above from SDragon and likely get a full reply to your question in a little while.

I know now I feel ay my best wiht a ferritin at around 100 : folate 20 : B12 active 75++ ( serum B12 500++ ) and vitamin D at around 100 :

and I need to supplement all the above to stay as well as I am.

[Allie20 in reply to pennyannie]

Hi PennyAnnie

I will start to look into what is considered to be quality vitamins and try them to see if it helps me to feel better.

Thanks again for your time response and understanding 🙏