latest results help to understand where I’m at.

[Allie20]

My latest results since being on block and replace. Started this 4 weeks ago and Endo wanted tests done at this duration to see how it was working.

TSH 11.8 - [0.27-4.2]

T3 4.4 - [3.1-6.8]

T4 11.8 - [12-22]

previous results on PTU only

TSH 4.5 -[0.27-4.2]

T3 5.0 -[3.1-6.8]

T4 <5 -[12-22]

I am currently taking 50mcg Levo in the morning and 20mg Carbimazole at night.

Nither GP or Endo have been in contact to advise on adjustments any thoughts from the knowledgeable people on the community.

I have considered lowering my Carbimazole to 15mg and continuing with same dose of Levo but not sure as only been on B&R for 4wks.

was put on Teva and not had a bad reaction but have collected new prescription and unable to get same brand so have now started with Accord as felt I had no choice. Either wait and get Teva and not take meds or take meds but different brand. Next BT in 6 weeks time. Even though Endo requested my folate & B12 to be tested lab refused as was done in October.

Any suggestions gratefully received as always.

Thanks in advance for sharing your knowledge and understanding 🙏🙏🎄

[PurpleNails Administrator]

The purpose of block & replace is the carbimazole blocks thyroid function.  The levo replaces. If you reduce the carbimazole the blocking action could be reduced which then has the potential to allow unexpected fluctuations.

There is a stabilising affect of add back with lower carbimazole & lower levo combinations but you have confirmed Trab & history of low FT4 high FT3 so full blocking is a more suitable option.   

It’s trial & error to get to right level. What is obvious is your very over blocked \ under replaced.  

Usually you alter either carbimazole or levo by small amount & retest after 6 weeks. It’s not uncommon to reduce carbimazole by 50%. Levo is altered by 25mcg.

I think you need a higher level of levo rather than interfering with carbimazole level. The level of 50mcg replacement is too low & FT4 is below range, specialist should have predicted this.  

1.6mcg x 1kg per body weight is a guide of expected replacement.  

[Allie20 in reply to PurpleNails]

Hi PurplleNails,

Thank you for your response

GP nor Endo have been in touch so will just maybe increase 25mcg myself. Can I take 50mcg one day then 100 the next as only have 50mcg tablets that I picked up this week. I was originally prescribed Teva but I went to 3 pharmacies and they only had Accord so accepted them as didn’t want to stop treatment until they may get them.

Thank you as always for sharing your knowledge and understanding it’s appreciated 🙏🎄

[PurpleNails Administrator in reply to Allie20]

you could get a pill cutter and take a split pill.

[SlowDragon Administrator]

Request 25mcg dose increase in levothyroxine up to 75mcg

Teva is only brand that makes 75mcg tablets….so that would give you Teva anyway

Bloods should be retested 6-8 weeks after each dose increase

What vitamin supplements are you currently taking

You need to test vitamin D, folate, B12 and ferritin

Approx how much do you weigh in kilo

[Allie20 in reply to SlowDragon]

Hi SlowDragon

Thank you for your response

I have only just started on the Accord brand as tried 3 pharmacies and they have no Teva.

Could I just take 50mcg one day and 100 next? To get the increase.

I weigh about 66kg at the moment but usually around 59-60kg.

My last Vitamin D test was all good my B12, folate and ferritin are low but they refused to test these as were done in October.

I’m not taking any additional supplements at the moment as waiting for next B12 test so they give me another round of loading then Endo said they would finally give me the maintenance needed.

Thank you as always for sharing your knowledge and understanding with me 🙏🎄

[SlowDragon Administrator in reply to Allie20]

yes you could do 50mcg and 100mcg alternate days….if you prefer Accord?

[Allie20 in reply to SlowDragon]

thank you Slowdragon always appreciated 🙏

[Cyclehappy]

Hi Allie20. I wish I could help you but I am not familiar with Block & Trace. I was put on Carbimazole a year ago and have gradually been reduced to 5mg. I am definitely not an expert but wouldn't advise stopping your medication without consulting your GP. Sorry not to be of help to you but there are some very knowledgeable people on this site who may be able to advise you. Good luck.

[Allie20 in reply to Cyclehappy]

Cyclehappy thanks for your response unfortunately my GP is clueless and does not take into account anything about how I’m feeling only interest is in range. I know I need to be high with my T3 and upper range for T4. I will wait for info from my Endo but increase my Levo by 25mcg and stay on my Carbimazole dosage until I get a response.

Thank you for sharing always appreciate what knowledge and support is offered from this community 🙏

[Sophitje]

Hello, I am not an expert either but when I was on the block and replace protocol for Graves, I had fluctuations too and times where I was under and over active. The endo each time prescribed an adjustment of levo replacement, never adjusting the carbimazole. Only towards the end of the protocole (after almost 2 years), they reduced the carbimazole dosage and withdrew the levothyrox accordingly, and eventually stopped the carbimazole all together. Better check with your endo though. Regarding levothyrox, it's OK to alternate days. This is what I had to do when I was on 'odd' dosage. The pills are so small, it's very hard to cut in half accurately so I think better to alternate. All the best

[pennyannie]

Hey there again :

So it would seem your T4 is now almost in range and coming up from an initial result of - 5 but your TSH has risen and your T3 dropped a smidgeon.

T4 is a storage hormone and does take around 6-8 weeks to fully build within the body so I would think your T4 will continue to build into the range and up to a level that sees your T3 increase again.

i think you need to just change one thing at a time and would look to increase your T4- Levothyroxine.

The AT drug is blocking your own thyroid hormone production and if you adjust this level you could see your antibodies ' take off ' again.

Best to stay put on the AT drug and add back in a measured dose of T4 that will not affect anything other than hopefully improve you T3 and T4 levels and resolve any symptoms of hypothyroidism you may be suffering.

For T4 - Levothyroxine to work well in our body we do need a strong core strength and optimal levels of ferritin, folate, B12 and vitamin D so I'd ask if these can also be run at your next blood tests.

[Allie20 in reply to pennyannie]

Hi PennyAnnie

Thanks for sharing as always

I have decided to take matters into my own hands and have increased my Levo by 25mcg so taking 50 one day and 100 the next day. Tablets too small for me to be cutting up even with my glasses on 🤓

I did not know that the T4 was a storage it’s always good to learn something new when I get responses. The whole process of having a thyroid condition definitely appears is going to be a life long journey that’s taking time adapting too as it’s such a rollercoaster

I will ask GP or Endo to re test all my vitamins with my next blood test but unsure if they will as lab refused them for this months bloods.

How can they do this?

Thanks as always for sharing your knowledge and understanding with me always appreciated

🙏

[pennyannie in reply to Allie20]

I think it's all down to costs and many of us have resorted to doing private thyroid and vitamins and mineral test ourselves :

I worked and paid a full stamp for over 40 years and can only get a TSH reading on the NHS which tells me diddly squat - but tells the NHS I'm fine ???

Last time I checked, around 5 years ago, it cost under £1.00 for a single blood analysis so it seems that's my yearly allocation of the NHS kitty ??

Now self medicating I'm am much improved and buying my own full spectrum thyroid hormone replacement as the NHS now only routinely prescribe T4 - Levothyroxine - the cheapest option.

Onwards and upwards !!

[Allie20 in reply to pennyannie]

I may end up in the future go down the same path to sort myself out. I will know where to come. I still have so much to learn from this community about my thyroid and the knowledge you all share so freely through your own experiences has helped me way more than the GP & Endo to date. I did ask my Endo what is the underlying cause and she said I don’t know we only treat the symptoms!! How is this cost effects for the NHS. Only cost effective for the big Pharma companies 🤔

[pennyannie in reply to Allie20]

The underlying cause is one of your own immune system having been triggered to attack your body rather than defend it.

Quite why your immune system has chosen to attack you is the 64 million dollar question and maybe something you might to think about.

Graves is said to be stress and anxiety driven AI disease and can occur after a sudden shock to the system like a car accident or unexpected death of a loved one or totally out of the blue.

There is probably a genetic predisposition with someone in your family, possibly a generation away from you with a thyroid health issue.

I only learnt of my Graves some 10 years post RAI thyroid ablation when very poorly and with no answers forthcoming from my doctor and hospital.

I found the sections in Elaine's website detailing complimentary and more holistic treatment options very interesting and you might find these sections of interest.

I think I've mentioned Elaine before and her very first book was my first dip into reading around Graves Disease though it is a challenge and I think written for the medical profession - I think her website is more easily managed and written with Graves patients in mind - elaine-moore.com

I wouldn't suggest you start looking after yourself yet - just start reading up and become better able to self advocate within the NHS system at the hospital where I believe we are better monitored than in primary care.

But it's true as thinking back i was told nothing about Graves and I never saw the same endo more than twice as they were all on 6 month rotations so they never saw anything through to learn anything of any consequence.

[Cavapoochonowner]

hello there, when I was on block and replace, the block part stayed consistant and it was the replace part(levo) which was adjusted accordingly.My dose was 40mg carbimazole per day and 100mcg levo mon-fri and 50mcg sat & sun.Obviously everyone is different but that is what worked for me.

[Allie20 in reply to Cavapoochonowner]

Hi Cavapoochonowner

Thanks for sharing your experience. I think with what people have said over last few days I’ve decided to increase to 75mcg daily. Well taking 50 1 day and 100 next and wait for next results to see how things are progressing 🙏