on-going Thyroid

[Billyboy2u]

In April. 22. I had some bloods taken and showed I was just starting to relapse, again. My Endo told my GP to increase my Levo from 100 to 125mg but keep my Carbimazole the same 40mg.

In Oct 22 I had further bloods taken and this time showed I was going under-active So my Endo ordered my Levo to be increased to 150mg and Carbimazole kept the same. I rang my GP and told him. You increased my Levo in April because I was going Over-active. Now, I'm going under-active and you want to increase it further, surely you mean reduce my Levo. ?

Oh, I see what you mean. I'll ring the Endo and get back to you. I was told. Today I was told the Endo says it's correct and my meds are ready to be picked up.

Am I wrong here. ? My GP also said I think he knows a little more than you abut thyroid's.

Those that remember me I've Graves and been Over-active for around 5 years now, relapsed once befor this time ? Plus told I needed iodine burning to remove my thyroid but declined their offer.

Thanks guys.

[PurpleNails Administrator]

What are yours results?

Sounds like doctors are going by TSH? & don’t know what they are doing. 

You need to know what FT4 & FT3 results are.

Carbimazole blocks your own thyroid from producing.  The levo restores levels.  

So if FT4&3 are low you need to increase levo and if high you decrease levo.

TSH is not reliable.  

[tattybogle]

"In April. 22. I had some bloods taken and showed I was just starting to relapse, again. My Endo told my GP to increase my Levo from 100 to 125mg but keep my Carbimazole the same 40mg."

No .. you weren't starting to relapse again in april .... your Low fT4 and High TSH showed you did not have enough thyroid hormone ... meaning you needed a Levo dose increase to increase T4 (by taking more) or a carbimazole reduction (to allow your own thyroid to produce more T4) .

April 2022 results were : healthunlocked.com/thyroidu....

"TRAb antibodies still remain positive.

TRAb 6.8

Free T3 4.8. (3.1-6.8)

Free T4 11.7 (10.0-22.0)

TSH 12.0 (0.30-4.50)

He is arranging to increase my Levo from 100 mg to 125 mg "

The increase in April was correct.

There are two ways to increase T4 level, they could have either:

~ increased your Levo to give you more T4 ,

~or decreased your Carbimazole to allow your own production of T4 to increase.

They chose to increase Levo.

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

"In Oct 22 I had further bloods taken and this time showed I was going under-active So my Endo ordered my Levo to be increased to 150mg and Carbimazole kept the same. "

When you say "showing i was going underactive" , if you mean your TSH is now high and / or your fT4 is Low again , then this means they need to do the same again ie. increase T4 levels . Either increase your Levo dose . or reduce your Carbimazole dose .

So your Endo and GP are correct.

[Billyboy2u in reply to tattybogle]

thanks for your explanation I'm even more confused now. Lol. But. As you say it does make sense so my Endo right. Thanks. I guess I'm hoping too much that my thyroid will start working properly on its own again. Just when you think your getting your head around it ...

I'm still lucky I suppose in the fact I don't feel anything with the changes. Like some report in here.

Thanks again.

[tattybogle in reply to Billyboy2u]

Hope the following helps a bit with your understanding. (might just confuse you more though ~ in which case just ignore it and have a chocolate biscuit )

You won't know if your thyroid is working properly on it's own until you eventually stop block and replace to find out .

basically . your thyroid isn't 'doing' anything at all right now .. it's totally on holiday (blocked) .. the full dose of carbimazole has turned it right off ... so you're not exactly 'going' underactive ..it's not going anywhere...the brakes are firmly on.

What is happening to you is just that your dose of replacement T4 (levo) is needing to be adjusted because 100mcg turned out to be nowhere near enough for you (fT4 was too low, causing TSH to go too high).. and so it was increased to 125mcg , which it turns out is still not quite enough, (presumably your latest TSH is still over range) so they've increased it to 150mcg .

Once you've been on that dose for several weeks , they will be able to tell from blood tests and symptoms whether that dose is :

a) enough. (fT4 level is better/ TSH hopefully in range / you have no hypo or hyper symptoms)

b) still not enough . (TSH goes high again/ fT4 is still low / you have hypo symptoms)

c) too much (fT4level is too high/ TSH very very low again / you have hyper symptoms)

Depending on a),b) or c) .. they will either a) keep Levo at 150mcg .. b) increase it to perhaps 175mcg .. or c) reduce it back a bit to perhaps 137.5mcg .

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

Think of TSH (Thyroid Stimulating Hormone~ the message) and fT4 (the thyroid hormone itself ) as sitting on opposite ends of a see-saw :

as fT4/3 goes low ~ the TSH rises.

and as fT4 /3 goes higher ~ TSH falls.

This can often lead to a bit of confusion with how Doctors tell us information when they are in a hurry

eg: They might say "your thyroid is low" and mean 'your fT4 is low and you are hypothyroid' ( not enough thyroid hormone).

But they could say exactly the same thing "your thyroid is low" and mean the opposite "your TSH is low and you are hyperthyroid' ( too much thyroid hormone)

[Billyboy2u in reply to tattybogle]

cheers. I'll keep this for reference. We'll put. It's 5 years I've been on block and replace granted after 2 years I relapsed so I think I'm due another go at stopping everything. As for symptoms. I'm lucky. I don't get any. Granted the very first time I did but I was undiagnosed so no one knew as I never go to the doctors normally. Anyhow. Cheers. I learn something new.

[Sophitje]

If you have Graves and your result in April showed that you were overactive, they should have reduced your levo not increase it. Also if you are on the block and replace regimen, they usually will keep your carbimazole at the highest dosage, usually 40, and until you are stable for a good while, then reduce the carbimazole as well as stop the levothyroxine replacement. I had that treatment and it took over 2 years, then I was fine /in remission for 10 years, then relapsed. More than often than not, people will graves will relapse unfortunately. I started the block and replace again in January 2019 but had a bad reaction to carbimazole (agranulocytosis) so ended up having full thyroidectomy in March 2019, I had no choice anyway, I didn't want the radioactive iodine treatment because of slight eyes issue from Graves. I've been feeling great ever since (even much better than when I was in remission actually when I never felt 100 %despite normal test results) so for me it was the best outcome. I was also very lucky that my consultants both times were excellent and followed me very closely with proper blood tests (full thyroid function every time and anti bodies tests etc). It's a long journey but I hope you manage to find the right balance again.

[PurpleNails Administrator in reply to Sophitje]

Having high TSH & low in range FT4 & FT3 Calls for a levo increase. April results

Free T3 4.8. (3.1-6.8)

Free T4 11.7 (10.0-22.0)

TSH 12.0 (0.30-4.50)

These results are not showing hyper.

Decreasing levo would result in higher TSH & even lower Frees.

[Sophitje in reply to PurpleNails]

I was talking about the April results as per the start of Billyboy's message in the first paragraph. He mentions a relapse of graves so hyperthyroidism. They should not have increased his levo back then. In October, the prescription was logical though.

[tattybogle in reply to Sophitje]

the information given about relapse in april was incorrect, possibly he remembered it wrong or was confused. if you look back at april's post by going back through posts on his profile page, you will see that in april he was hypo with high TSH and low fT4. and so dose increase was correct.

It's always a good idea to check previous post for relevant history before replying as many people can be confused/ misremember by what they were told by GP's who tend to use medical 'shorthand' when describing thyroid action to patients. eg they may say 'your thyroid is going low' .. meaning 'your TSH is low' ... the patient thinks they mean 'low' as in 'underactive' , but in that instance they were overactive/ overmedicated .. and vice versa. .. GP say's 'thyroid is high' meaning 'TSH is high' .. patient thinks they mean overactive/ overmedicated when they are actually undermedicated /hypo. It happens a lot, so it's always best not to take what poster's says about their condition at face value but ask for the actual results.

[Billyboy2u in reply to tattybogle]

I fear your right tattybogle. My recollection was a rough estimate of what's happened in the past for those that remember me, and a brief explanation of what's happened to me in the past for those reading it who don't No exact dates and as you say how I roughly remember it. Sorry for the confusion I also foolishly started a new thread as I thought the old one was getting a bit long. Maybe I should have mentioned the original thread.

However thanks to all for the wonderful help I still receive from in here. I still read the posts, but have not posted as often as I should have, mainly because I've been doing so well. I think. These are my new results.

TSH. 9.7. (0.30 -4.50)

T4 15.3. (10-22)

No T3 ? results I can see,,

The letter from my Endo does state I'm now slightly underactive have more bloods taken 6-8 weeks

[PurpleNails Administrator in reply to Billyboy2u]

Shame FT3 wasn’t tested.  

TSH improved but still high.  

Most say they feel comfortable with a TSH of around 1.  but the focus if having FT4 & FT3 in range - but not too low - where you feel well.  

Mid range a better aim.  

When TSH too high FT3 likely too low.  

Six months between tests is really too long between testing.    GP can arrange testing between specialist appointments.  

Levels are abnormal, you also had an adjustment.  You should have been testing 6 weeks later eg may / June time.  

It’s really a case of testing until in range & once stable on 3 - 4 occasions then testing can go longer but at least every few months.  

After any adjustments to either carbimazole or levo you also need to test around 6 weeks later. 

The advice on NHS website specifies :

When you first start treatment, you'll have blood tests every 6 weeks or so. Once your hormone levels are stable, you'll have a blood test every 3 months, for as long as you continue to take carbimazole.

nhs.uk/medicines/carbimazole/

Glad they said to test 6 weeks later.  

[SlowDragon Administrator]

important to test vitamin D, folate, B12 and ferritin levels

Levothyroxine needs good vitamin levels to work well

When were these last tested?

what vitamin supplements are you currently taking

[Billyboy2u in reply to SlowDragon]

Vit D,ferritin,folate,B12. All good. These are my October results

Not taking any vitamins although had a course of B12 injections March/April this year

Thanks

[SlowDragon Administrator in reply to Billyboy2u]

can you add actual vitamin results and ranges

If your B12 was low enough for B12 injection that usually means you need one every 3 months minimum

[Billyboy2u in reply to SlowDragon]

I had my first course. 6 injections. Told starting next year I'll have them as you say every 3 months.

Ferritin. 46. (12-250

Folate5.4. (2.-18.8)

B12. 607. (150-1000)

Vit D. 82. (>750)

[SlowDragon Administrator in reply to Billyboy2u]

low vitamin levels are strongly linked to being hypothyroid, as causes low stomach acid and poor nutrient absorption

Ferritin is extremely low, especially for a bloke

Look at increasing iron rich foods in diet 

Eating iron rich foods like liver or liver pate once a week plus other red meat, pumpkin seeds and dark chocolate, plus daily orange juice or other vitamin C rich drink can help improve iron absorption

List of iron rich foods

dailyiron.net

Links about iron and ferritin

 

irondisorders.org/too-littl...

davidg170.sg-host.com/wp-co...

Great in-depth article on low ferritin 

oatext.com/iron-deficiency-...

drhedberg.com/ferritin-hypo...

This is interesting because I have noticed that many patients with Hashimoto’s disease and hypothyroidism, start to feel worse when their ferritin drops below 80 and usually there is hair loss when it drops below 50.

Thyroid disease is as much about optimising vitamins as thyroid hormones

healthunlocked.com/thyroidu...

restartmed.com/hypothyroidi...

Post discussing just how long it can take to raise low ferritin 

healthunlocked.com/thyroidu...

Never supplement iron without doing full iron panel test for anaemia first and retest 3-4 times a year if self supplementing. It’s possible to have low ferritin but high iron 

Medichecks iron panel test 

medichecks.com/products/iro...

Iron and thyroid link

healthunlocked.com/thyroidu...

Excellent article on iron and thyroid 

cambridge.org/core/journals...

Posts discussing why important to do full iron panel test

healthunlocked.com/thyroidu...

healthunlocked.com/thyroidu...

Chicken livers if iron is good, but ferritin low

healthunlocked.com/thyroidu...

Heme iron v non heme

hsph.harvard.edu/nutritions...

Ferritin over 100 to alleviate symptoms 

healthunlocked.com/thyroidu...

[SlowDragon Administrator in reply to Billyboy2u]

B12 and folate

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

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

The three months between injections is an arbitrary time scale. If you need injections more frequently then you can request this

[Billyboy2u]

thanks guys... I don't take anything to help but will from now on. My weight is a terrible problem from last year on. To the point where as I've always been a big lad, muscle not fat, no I only eat toast in the morning and have a sandwich at night and still put it on. In fact the only time I lose weight, or get back down to my normal weight is when I go over-active, or as Tatty says, my TSH goes high.

It gets to the point I want to be ill like I was when first diagnosed. I lost quite a bit weight then and felt really great, like I did as a kid.

I'll follow your advice of course and maybe have another talk with my GP although he says we'll deal with the weight after we sort out your thyroid.

Thanks again guys.

[PurpleNails Administrator in reply to Billyboy2u]

You are currently hypothyroid & that will make loosing weight difficult.   

Do you have stomach / digestion issues?

Many who have Graves have issues with gluten. 

 A test can detect gluten allergy (celiac) but not intolerance.  

So test first to rule out and even if negative worth trialling a Gluten free diet - must be strictly no gluten to be of benefit.  

[Billyboy2u]

I'll look into it thanks. Someone else mentioned that too. Thanks