2nd 6wkly bloods after RAI

[Coulby]

These are my 2nd 6 wkly bloods since RAI on 1st OCT 2024.

Please can someone advise on results and what they mean.

6th Jan 2025...

FREE T4 6.9

TSH 22 MIU

FREE T3 3.6

Thanks heaps

Coulby

[PurpleNails Administrator]

could you add reference range please?

The levels look low by most ranges.

How are you feeling?

[Coulby in reply to PurpleNails]

Reference range...(free T4 12.0 -2-22.0)

TSH (0.4-40.4-00) Free T3 (2.5 - 6.0))

[Coulby in reply to PurpleNails]

I feel absolutely dreadful and would not recommend RAI to anyone 🥺

[PurpleNails Administrator in reply to Coulby]

TSH 22 (0.4 - 4)

FT3 3.6 (2.5 - 6.0)

FT4 6.9 (12 - 22)

Your TSH is very high, FT4 well below range & FT3 also low in range.

You must feel terrible.

Do you have a specialist monitoring you?

The specialist seems to be unconcerned leaving you hypothyroid as you were left taking too high a dose of carbimazole long before having RAI.

You were showing signs of hypothyroidism after RAI with below range FT4.

I think your dr just looked at TSH & TSH can be unreliable.

You need to be started on levo replacement as soon as possible.

[Coulby in reply to PurpleNails]

Hi there and thankyou...I havnt seen a specialist since the RAI except for the phone call with results of the 1st Blood testest..That's when she said IL aim to have you right by Christmas.Her letter to my doctor stated "I am happy to discharge her to your care after the next blood results"..

I havnt seen my doctor either as he's been away.

.

I'm over it all 😥

[PurpleNails Administrator in reply to Coulby]

Please contact your doctor and tell them you are very unwell. The specialist has discharged you because you are no longer hyperthyroid. But you have become hypothyroid post RAI. Primary care / general practitioner usually able to prescribe replacement and increase dose gradually.

Do you have a relative / friend who can chase up and communicate with doctor to help speed it up as much as possible?

Drs & staff tend to pay more attention if another person is saying this person needs help...

[Coulby in reply to PurpleNails]

No I don't...Only my daughter but she lives in Australia...My doctor still isn't back 😕

Ive phoned to say how unwell I am and keep being told they need to hear from the specialist..Tried phoning her but can't get through as always unavailable

[Coulby in reply to PurpleNails]

Hi again...Finally my specialist phoned although clearly in a hurry...No mention of my results ! I said I feel so ill, she said what's wrong? I explained I was exhausted,aching everywhere, sore neck,headaches etc etc etc...Her response=Oh I don't know why you're feeling like that you should only feel more tired.

She then said I'm starting you on 100mg of Thyroxine and you should start feeling better in about 10 days,Don't worry 🙄

Well gee that cured everything my mind was thinking..NOT

Responses welcome 🌻

[Pandora777 in reply to Coulby]

Have you thought of trying NDT? The other question is do you have the money to pay for it? I purchased Thyroid S from Thailand because my doctor refused to prescribe it. Your doctor doesn’t understand that you now have no thyroid and will have to rely on Levothyroxine to survive. You might need T3 or liothyrodine as well as Levothyroxine. Sometimes people with no thyroid need both Unfortunately not all doctors prescribe it but you can ask her to

[Coulby in reply to Pandora777]

No I can't afford to buy...Oh I didn't know that I may Need another drug as well ...

I'm wondering how I will feel on Levo 🌻

[Pandora777 in reply to Coulby]

Ask your doctor for a trial of T3. You should not be feeling this ill

[Coulby in reply to Pandora777]

Ok I will do that...It's all so confusing to me but at least I've heard from the specialist who was no help at all 🤷‍♀️

[Pandora777 in reply to Coulby]

I am not surprised they have caused you to feel this way and they should be treating you

I was told to haveRAI 15 years ago and refused because I had heard about the long term medical implications Elaine Moore now has stomach cancer after RAI. I am not saying it will happen to you but there can be problems years after RAI

Here is a link to her site

elaine-moore.com

[bantam12 in reply to Coulby]

I had RAI more years ago than I can remember 🙄 at my 4 week check I was very hypo which after all was the plan so what a relief ! I was started on Levo and after a couple of dose tweaks life got back on track.

You are still in the early days and your body is adjusting, give the Levo a chance, there are millions of people who are absolutely fine after RAI and who take just Levo, don’t even think about buying other meds until you have given yourself time, and that may well take some months, don’t assume it’s not going to go well. Take care and I hope you feel better soon, just don’t try to rush it !

[Pandora777 in reply to bantam12]

Yeah that’s true but there are also others who are struggling to regain their health. I talk to them every day on this site and others in the USA

[bantam12 in reply to Pandora777]

As in everything people will have positive and negative reviews but maybe hearing the positives is more encouraging.

[Coulby in reply to Pandora777]

Thankyou...Yes I'm struggling...I was diagnosed in 2013 and I wasn't told,I only found out about my thyroid last year...I've been ill for a number if years and I'm finding it very difficult as it's affecting my other comorbid health problems...Thankyou x

[Coulby in reply to bantam12]

Thankyou so very much for your positive words...Very much appreciated 😊

[tattybogle]

Hi coulby , the results show your TSH has continued to rise since having RAI, and is now 22 which is very high , this shows your body is asking for more thyroid hormone , because your thyroid gland is now not capable of producing enough T4/T3 for your needs.

this is to be expected as the object of RAI is to destroy the gland to some degree, but with no way of knowing how much of it will be destroyed , or how fast ~ occassionally people do not need levothyroxine after RAI , or not for a few yrs , but it is very common to need to replace thyroid hormone at some point after having RAI )

your thyroid hormone levels are now low ~ fT4 is extremely low , and fT3 is within range , but towards the lower end.

with such low T4/T3 levels, you would be expected to feel lousy, because you are now hypothyroid.

the endo who assured you you would not need to take levo after having RAI was incorrect, or at least wildly over optimistic .... these latest result show that you now need to be started on thyroid hormone replacement.

[Coulby in reply to tattybogle]

Thankyou so much...I should be getting a response to the response in a few days..IL update you all 🌻

[Tina_Maria]

You should make an urgent appointment with your endo or GP and ask to be started on levothyroxine straight away. This should have been picked up much sooner. Your fT4 is below the reference range and your T3 is around 31% through the range, which means that your thyroid hormones are far too low for what your body and metabolism needs and it is no wonder you feel dreadful. Most people feel well when their TSH is around 1! and both their T4 and T3 at least 60% through the range. A TSH of 22 basically means that your pituitary is screaming at your thyroid to produce more thyroid hormones, which it clearly can no longer do.

The usual starting dose for people above 65 is 25 mcg levothyroxine per day, but if you have not got heart disease , I would ask to get started on a higher dose of 50 mcg to increase your levels a bit more quickly. You then need to get tested after 6-8 weeks and your medication adjusted upwards until you are at your replacement dose.

Have you tested your nutrients as well? You should check your folate, Vitamin B12, iron and Vitamin D and if some of these are deficient, you need to start supplementation, as these key nutrients will help you process your thyroid medication much more efficiently.

[Coulby in reply to Tina_Maria]

Thankyou for that...I have heart Disease and have had heart attacks..also I have Lewy Body and my memory etc is being affected quite a lot as well as my body in most area's..I just feel dreadful 😔

[Tina_Maria in reply to Coulby]

Sorry to hear that. Still, you should be started on 25 mcg levothyroxine straight away and then after 6-8 weeks have your next increase.

I can understand that it is very difficult, especially when you are feeling so unwell, but you need to go and tell them that it is not acceptable you having a TSH of 22 - this is bordering on medical neglect. If the specialist has discharged you, then they have given the care over to your GP, so your GP needs to deal with this. I hope you can get them to listen, as a very last resort, you can put a complaint to the practice manager that you have not been given the care you need, but I can understand that you may not want to do that. However, sometimes that will make them jump into action.

[Coulby in reply to Tina_Maria]

Thankyou for that advise...I definitely need to do something about it and soon...I will update when I have info 😊

[Tina_Maria in reply to Coulby]

I hope you can get them to do something about it. Please let us know how you get on and good luck!

[Coulby in reply to Tina_Maria]

Thankyou heaps...My pharmacist phoned and said that my stomach meds for GERD and Manesium for body cramps re Parkinisms interfere with the uptake of Levo...So just waiting to hear what's going to happen.

It's10.40pm here in NZ and I'm off to bed..I will update you all when I know more.more.Many thanks 😊

[pennyannie in reply to Coulby]

There is a liquid form of T4 - which might make more sense considering your other medications.

As a tablet T4 is a ' very fussy hormone ' and needs to be taken well away from any other medications and must be well adsorbed into the blood stream.

[Coulby in reply to pennyannie]

Thankyou...Now I get why I have to take it 1- 2 hours before all other meds 😊

[pennyannie in reply to Coulby]

So you have tablets ?

Do you get up in the night - to use the bathroom - you could take the T4 then -

as well away from anything else and gives your body plenty of time to breakdown and absorb in your liver.

[Coulby in reply to pennyannie]

They don't arrive until Tuesday...But have worked out that if I put them by my bed with water I could take them at 7am (My night ones i take at about 10pm) Then take my others at 10am...That should work ? ?

[pennyannie in reply to Coulby]

Ok - just be aware that you will also need to leave a good hour after taking T4 - before you can have that cup of tea or coffee !!

[Coulby in reply to pennyannie]

lol....IL being craving my only coffee of the day by then to keep me awake

.Thanks so much for your pearls of wisdom...Off to bed now 😴 🌻

[pennyannie in reply to Coulby]

Sweet dreams :

[SlowDragon Administrator]

Your post 2 months ago with results

3 Days before RAI..

8TH OCTOBER

FREE T4 =11.9 (12.22)

FREE T3=4.6 (2.5-6.0)

TSH=0.75 (0.4-4.0)

6 WEEKS AFTER RAI

T4 10.5 (12.22

FREE T3=4.1 (2.5-6.0)

TSH =1.1 (0.4-4.0)

Both these results show you needed starting on Levo in Dec

FT4 was below range in both test

And levels dropping

Now you are extremely hypothyroid

You need starting on levothyroxine immediately

[pennyannie]

Hey there again :

What this all means is that now your T3 and T4 are much too low to function on -

and you are very hypothyroid - physically and mentally -

and you will need to be started on T4 - thyroid hormone replacement for the rest of your life -

What response has there been from your consultant / doctor - to these blood test results ?

No thyroid hormone replacement works well until the core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D are up and maintained at optimal levels -

RAI is known to trash vitamins and minerals - so please get these bio-markers run and we can advise you on the results - as just being ' in a range ' somewhere - is not optimal :

I am so sorry that the medical advice you were given does not seem to be the reality you face.

[Coulby in reply to pennyannie]

Thankyou...I've had no response yet..I guess IL hear from the specialist in a couple of days...Being totally on my own makes it very hard,even to say I feel awful to someone helps...oh my poor driver,she gets all the moans and groans..IL update you when I know more 🌻