Help for overactive T4 result

[D9d9]

My Sister has been diagnosed with overactive thyroid again. Second time in 7 yrs. She was put on Carbimazole for a few months the first time then was taken off them when things went back to normal. 7 yrs on her T4 is very high again now and they may well want to take things further than Carbimazole. What is the best treatment for her this time? Graves disease has been mentioned.

[PurpleNails Administrator]

If she was on carbimazole for a few months last time it might only be needed for a few months this time.

With Graves you tend to need a high dose initially then treatment for months / years.

With Hashimoto’s you can have transient rises which are not as elevated as Graves often is and is not from over production but from destruction of thyroid during an autoimmune attack.

7 years apart would be a long time for early stage Hashimoto’s but full antibody testing should be completed before considering permanent solution as such as radioactive iodine or surgery.  These options almost always result in hypothyroid and are irreversible.  

What dose of carbimazole has she been given? 

Antibodies: 

TSI - Thyroid-Stimulating Immunoglobulin (signifies hyper Graves)

 TRab - TSH receptor antibodies (TRAb) (signifies Graves) 

TPOab (Thyroid Peroxidase antibodies) (autoimmune, both Hashimoto’s & Graves) 

TGab (Thyroglobulin antibodies) (autoimmune, both Hashimoto’s & Graves) Which have been tested? 

Also important to see exact results (with ranges) for - TSH, FT4, FT3, key nutrients, folate, ferritin, B12 & vitamin D. 

[tattybogle]

Hi D9d9

If it IS Graves ~this should be confirmed by testing for the antibodies that cause it:

TRab (Thyroid Stimulating Hormone Receptor antibodies ) or TSI (Thyroid Stimulating Immunoglobulins )

Then if she feels ok once the levels are under control with Carbimazole .. then that is the best treatment this time too.. because it allows for the possibility of Graves going into remission again (once the antibody levels go down) and her still having a functioning thyroid ( which is usually preferable to the alternatives)

if Carbimazole is not tolerated , there is another anti-thyroid drug (PTU) which can be tried .

These are usually given for about 18months to allow time for the antibodies to go down , before trying to come off it (as she did last time) .. but there is no time limit on how long you can take Carbimazle/ PTU for.... some people on here have been on it for many years .. and there is research showing that the longer you are on it, the better the chances of Graves staying in remission once you do try to come off .

The other alternatives are permanent :

a)to surgically remove the thyroid ( Thyroidectomy) .

b) to destroy it in situ ( Radioactive Iodine Ablation ~ RAI)

Both mean the thyroid hormones (T4 and T3) must then be replaced every day for life ~ usually with Levothyroxine (T4)... or if that doesn't work well enough, with Levothyroxine AND Liothyronine (T3).. and less commonly with Natural Desiccated Thyroid NDT (T4 and T3 from a pigs thyroid gland )

unfortunately some people do really struggle to feel well once on Levothyroxine , ('most' are ok) but since Liothyronine is VERY difficult to get on the NHS ,and NDT is more or less impossible to get on the NHS ...having the thyroid permanently disabled is not a good idea unless there is no alternative ( cancer) or life 'with it' is no longer tolerable .

The NHS will tend to push for early 'definitive' treatment using RAI ~ because it's cheaper than surgery to perform ,has no surgical risks, and definitive treatment gets people off the (expensive ) endocrinology list and onto the (cheaper) GP list .and treatment with Levothyroxine costs pennies.

However RAI has risks and problems too. pennyannie and PurpleNails can tell you about them better than me.

The NHS seems to give patients the impression that RAI may mean they do not end up on Levo ,, but in reality . most RAI patients usually do need to replace thyroid hormone eventually .. it might take a few years to get there because the radiation only destroys the thyroid slowly .

They also 'forget to mention' the option of staying on long term Carbimazole /PTU at a low dose (overseen/ monitored by an endo) if that allows you to feel well and remain stable.

They often over emphasise the risks of Carbimazole /PTU~ there is a risk , and it is serious . if it happens you have to come off it straight away as it is to do with liver function ... but the risk that this side effect will affect you does not increase the longer you are it .... the risk of it happening to you is the same if you are on it for one week , or 10 years.

[pennyannie]

Hello D9d9

If there are no obvious physical symptoms such as a goitre or difficulty eating, swallowing or breathing causing her symptoms she is likely dealing with either Hashimoto's- a thyroid auto immune disease or Graves and auto immune disease that tends only to get diagnosed when Graves attacks the thyroid or eyes.

There is no cure for either of these AI diseases but Hashimoto's dies with the gland whereas Graves is multi organ.

They can both present initially in the same way and why i is very important to identify which antibodies are over range and positive as they are not treated the same way.

The antibodies unique to Graves are written as a Thyroid Receptor Blocking antibody -

a TR ab - or a Thyroid Stimulating Immunoglobulin - a TSI :

The most well rounded website I found for Graves Disease is that of the Elaine Moore Graves Disease Foundation - elaine-moore.com

For Hashimoto's I read thyroidpharmacist.com is well recommended.

The most current research for Graves is suggesting the longer the patient stays on the AT medication the better the outcome for the patient :

pubmed.ncbi.nlm.nih.gov/338...

Though I do believe the NHS still just offer around a 15-18 month window with the AT drug and if remission isn't found a more permanent treatment option is encouraged.

ncbi.nlm.nih.gov/pubmed/306...

[Confide55]

From my experience I would continue on Carbimazole and then consider, block and replace which is a combination of Carbimazole and Levothyroxine. I got persuaded by the Endo I saw to have RAI after being told Carbimazole could cause heart and liver problems and Levothyroxine was much safe and I would feel much better taking this, do not believe this, Endos are only interested in getting you off their list !! Three years after RAI and I am still struggling !

[helvella Administrator in reply to Confide55]

But not if the Carbimazole is causing liver damage. It can kill to keeop taking it in thise circumstances.

4.4 Special warnings and precautions for use

Bone marrow depression including neutropenia, eosinophilia, leucopenia and agranulocytosis has been reported. Fatalities with carbimazole-induced agranulocytosis have been reported.

Rare cases of pancytopenia/aplastic anaemia and isolated thrombocytopenia have also been reported. Additionally, very rare cases of haemolytic anaemia have been reported.

Patients should always be warned about the onset of sore throats, bruising or bleeding, mouth ulcers, fever and malaise and should be instructed to stop the drug and to seek medical advice immediately. In such patients, white blood cell counts should be performed immediately, particularly where there is any clinical evidence of infection.

Following the onset of any signs and symptoms of hepatic disorder (pain in the upper abdomen, anorexia, general pruritus) in patients, the drug should be stopped and liver function tests performed immediately. Early withdrawal of the drug will increase the chance of complete recovery.

Carbimazole tablets should be used with caution in patients with mild-moderate hepatic insufficiency. If abnormal liver function is discovered, the treatment should be stopped. The half-life may be prolonged due to the liver disorder.

Carbimazole should be stopped temporarily at the time of administration of radio-iodine (to avoid thyroid crisis).

Patients unable to comply with the instructions for use or who cannot be monitored regularly should not be treated with carbimazole.

Regular full blood count checks should be carried out in patients who may be confused or have a poor memory.

Precaution should be taken in patients with intrathoracic goitre, which may worsen during initial treatment with carbimazole. Tracheal obstruction may occur due to intrathoracic goitre.

The use of carbimazole in non-pregnant women of childbearing potential should be based on individual risk/benefit assessment (see section 4.6).

There is a risk of cross-allergy between carbimazole, the active metabolite thiamazole (methimazole) and propylthiouracil.

There have been post-marketing reports of acute pancreatitis in patients receiving carbimazole or its active metabolite thiamazole. In case of acute pancreatitis, carbimazole should be discontinued immediately. Carbimazole must not be given to patients with a history of acute pancreatitis after administration of carbimazole or its active metabolite thiamazole. Re-exposure may result in recurrence of acute pancreatitis, with decreased time to onset.

Women of childbearing potential and pregnancy

Women of childbearing potential have to use effective contraceptive measures during treatment.

The use of carbimazole in pregnant women must be based on the individual benefit/risk assessment. If carbimazole is used during pregnancy, the lowest effective dose without additional administration of thyroid hormones should be administered. Close maternal, foetal and neonatal monitoring is warranted (see section 4.6).

medicines.org.uk/emc/produc...

[pennyannie in reply to Confide55]

I think it all a question of the degree of inconvenience being suffered by the patient but of course if the AT drug is causing serious, life threatening consequences, a more radical approach needs to be actioned as Graves is considered life threatening if not treated

You might to read around on the Elaine Moore Graves Disease Foundation website :

elaine-moore.com

You must be dosed and monitored on Free T3 and Free T4 readings and not a TSH :

Research papers I 've collected -

pubmed.ncbi.nlm.nih.gov/338...

ncbi.nlm.nih.gov/pubmed/306...

[pennyannie in reply to Confide55]

Just seen that I replied to you a couple of years ago but you didn't reply then and so probably the same thing will happen again :

[Confide55 in reply to pennyannie]

Hi pennyannie I don't very often use social media or reply to forum posts as I always worry I am going to say the wrong thing ! But I do feel strongly about RAI and wanted to pass on my experience.

[pennyannie in reply to Confide55]

Just as I do and since getting myself better, self medicating and from reading a few books and the help offered from here from other forums members I now have a better understanding of my situation and why I come back on here to try and help others in a similar situation and share my research.

I'm not on social media and just use this forum as without it, I would be lost and very unwell.

[Confide55 in reply to pennyannie]

I agree with you, as I have learnt so much from this forum and people like yourself. I am in a bit of a dilemma as to what to do next, when I get the results from my recent blood test I will post them on here for some advice.