First post, help please

[Jojoha]

I've been on the same medication for a long time. My latest results from last week are as follows T3 7.1 free T4 15.4 tsh 0.01. carbimazole 20mg and levo 50mcg. Always tired. Any advice appreciated

[helvella Administrator]

Welcome.

I think we need more information in order to helpfully answer your question.

Do you know the reference ranges for those tests?

Why are you on Carbimazole and Levothyroxine?

Have you had your iron levels checked? (At least ferritin, hopefully more comprehensive tests.) And B12 and folate? And anything else.

[Jojoha in reply to helvella]

Thank you for replying. T3 7.1 range 3.9-6.8. free T4 15.4 range 11.0-24.0. tsh 0.01 range 0.35-4.5. I'm on block and replace as I'm not ready for surgery yet.

[SlowDragon Administrator in reply to Jojoha]

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

With Graves and hashimoto’s low vitamin levels are extremely common

[Jojoha in reply to SlowDragon]

I will ask for these. Have a new doctor who seems to have taken an interest as only had bloods done in December then he requested more a couple of weeks ago.

[helvella Administrator in reply to Jojoha]

Block and Replace always used to be taking enough anti-thyroid medicine to shut down your own thyroid and rely wholly on replacement. Clearly that is not what you are doing.

Do you have Graves? Or some other cause of hyperthyroidism?

[Jojoha in reply to helvella]

Why is that clearly not what I'm doing? I don't mean to sound rude but I thought that was what I was doing. No one has ever mentioned graves so no idea. I wish I had joined sooner as you all are so knowledgeable. Looking forward to your reply.

[helvella Administrator in reply to Jojoha]

Asking questions isn't rude!

(I was more concerned that you might take my reply as being rude - which was not intended.)

I'll quote someone else's words:

Block and Replace Protocol

In the block and replace protocol, patients are kept on the usual starting doses of ATDs until they become euthyroid. Then, rather than decreasing the ATD dose, a low dose of thyroxine is added to the regimen. Patients following this protocol are thought to have more stable thyroid levels and they are less likely to become drug resistant. In the original studies of Yamamoto, thyroid function was assessed after one year by an RAI uptake scan. At uptake levels less than 25%, the drugs were weaned. This approach effectively predicted probable remission. With this protocol, remissions were reported to be achieved in more than 90% of patients.

In some Block and Replace protocols, the drugs are slowly weaned over time until patients remain on a low dose of levothyroxine alone. This helps to reduce glandular activity and diminish thyroid hormone production. Usually, patients are kept on a low dose of levothyroxine or Armour thyroid for 1 year or indefinitely if thyroid function appears stable.

elaine-moore.com/Articles/G...

One of the fundamental ideas of block and replace was that by taking enough anti-thyroid medicine, your thyroid is taken out of the equation. There is then only one thing to be concerned about - dose of levothyroxine - which would be expected to be a full replacement dose (typically 100 to 200 micrograms).

Your medication might initially look like block and replace, but it is failing to keep your Free T3 within range. I can't believe you are getting that high a Free T3 result if your thyroid is non-functioning and you are on only 50 micrograms of levothyroxine.

You appear to be on what is sometimes called a titration regime. Reduce the anti-thyroid medicine until test levels look OK - and sometimes add some levothyroxine.

It is absolutely appalling that the cause of your hyperthyroidism has not been properly communicated to you. The most common is Graves Disease but there are others.

Below is a link to the USA guidelines. The language is awful - they seem dead set on writing things in a complicated, obscure fashion, but worth a go:

liebertpub.com/doi/full/10....

Elaine Moore has a much more accessible site:

elaine-moore.com/

Don't hesitate to ask - I have no experience of hyperthyroidism but many here do.

[Jojoha in reply to helvella]

Thank you for the info on block and replace. My doctor said he thinks I should go down to 10mg carbimazole but wanted to speak to endo first. I will ring and see where we are. I will also ask if I have graves. It sounds silly but as time goes on you just get on with things as you are so used to feeling rubbish it becomes normal. Since my doctor has taken an interest it has spurred me on to change how I feel. Thank you for your help.

[elderflower2016 in reply to Jojoha]

Well, your FT3 level is slightly too high. As you're following the block/replace protocol, it means either your carbimazole is slightly too low or your levothyroxine is slightly too high. So you have a choice (I think) of either increasing your carbimazole slightly or reducing your levothyroxine slightly. Please discuss with your endo.

[pennyannie]

Hello Jojoha

Can you please give us more information about your thyroid journey ?

I was on Carbimazole as I was diagnosed with Graves Disease and then 18 months later I was treated with RAI to ablate my thyroid. I wouldn't recommend this treatment, and I too wish I knew of this website sooner.

Why were you put on Carbimazole - did you have a positive TSI/TRab blood test confirming Graves ?

Carbimazole blocks your thyroid hormone production : Levothyroxine adds back in a controlled level of thyroid hormone.

You may will feel exhausted as your metabolism is out of control and this causes a myriad of symptoms and would suggest that you ask for ferritin, folate, B12 and vitamin D to be tested as your core strength will be under considerable stress and pull you down even further.

[Jojoha in reply to pennyannie]

Hi, I have had it for years and no tweaking of medication after blood tests so just got on with it. I will definitely be asking for these other tests. I feel the new doctor is actually interested in treating me. Thank you for replying

[pennyannie in reply to Jojoha]

I don't know if this helps you but the Elaine Moore Graves Disease website is very active and well respected foundation.

There are many sections within the website and much information about living with thyroid autoimmune conditions including the various treatment options long term.

Your post reads as though you are resigned to having surgery and loosing your thyroid :

I deeply regret my thyroid being ablated and now read that there were and are options not so drastic, but sadly I wasn't informed at the time, and have had to learn of my situation back to front.

[Jojoha in reply to pennyannie]

Oh no I don't want surgery. I was more resigned to feeling rubbish as I have for years so that is my normal. Hopefully my doctor will do the new tests that were mentioned earlier and we will get a clearer idea of what is going on. I have looked at the Elaine Moore page. Lots to read. Really sorry that you didn't have any options.

[pennyannie in reply to Jojoha]

If your doctor doesn't help, you can order these tests privately.

I had to do this as do many other thyroid sufferers who use this site.

The Thyroid uk website has details of the private companies who undertake blood tests:- Medichecks and Blue Horizon seeming to be the main two.

If your doctor does offer the full thyroid blood test package to include the vitamins and minerals, just be aware that the NHS " in range and therefore you are ok " statement doesn't necessarily apply to us, as we need optimal levels to improve our health.

Once with some results please come back on with a new post and people better able than myself will advise where and what to do to maximise your health.

There is a lot read on the Elaine Moore website, but take it in small chunks. Elaine has the disease and is a medical researcher and think her website a little more easier to digest than her books on the subject.

It's miserable being unwell, and feeling " rubbish " all the time.

There is help here - I've managed to turn things around for myself thanks in the most part to this amazing website.

[Jojoha in reply to pennyannie]

Glad to hear you are doing well. This forum is such an eye opener. People are so knowledgeable and helpful. I will ring the doctor on Monday. Thanks for your help