Newly diagnosed - update

[Thatravers]

Hi everyone. I was advised to update results in a new post. I am to take carbimazole 10mg 3x per day; sustained release propranolol 80mg 1x per day.

These are my abnormal bloods - ordered by the GP, as I called to say my heart was racing; I have unexplained weight loss and feel generally rubbish - emotional and tearful an difficulty concentrating on work which is stressful.

Serum creatinine 43 umo/L

Serum folate >20.0 ug/L

Serum Free T4 level 74.5pmol/L

Serum TSH level 0.02 mu/L

MCV 77.8 fL

Lymphocyte count 3.85 10*9/L

I don't really know what they mean.

There was going to be no follow up other than a three month blood test, ordered by the endocrinologist she spoke to on the phone, until I (how did I not notice before??) my thyroid is really swollen - more so on the right side - and put two and two together. I've been having difficulty swallowing, my throat feels slightly constricted and my voice crackles sometimes.

She has now referred me to neck and head dept, through an urgent referral, she says it will take about a month because of current situation and also to an endocrinologist.

[SlowDragon Administrator]

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested.

Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially if you have autoimmune thyroid disease (Hashimoto's) Or Graves’ disease

Ask GP to test vitamin levels

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Ask GP to test thyroid antibodies

TPO and TG antibodies for Hashimoto’s (or Graves too)

TSI or Trab antibodies for Graves’ disease

What’s the range on MCV and creatinine results?

[Thatravers in reply to SlowDragon]

Can you explain the abbreviations please?

The normal range for MCV is 80-100;

The normal range for creatinine is <11

[SlowDragon Administrator in reply to Thatravers]

So low MCV - suggest anaemia

Ask GP for full iron panel test including ferritin

healthline.com/health/rbc-i...

en.wikipedia.org/wiki/Mean_...

[Thatravers in reply to SlowDragon]

Thank you. Wonder why GP doesn’t pick up on this?

[SlowDragon Administrator in reply to Thatravers]

You also need vitamin D, folate, ferritin and B12 tested

[Thatravers in reply to SlowDragon]

Hi. Just wanted to check something. I will ask my gp for these tests, but what will happen with them? Will gp be able to interpret them?

Also, I was told resting would be six monthly? Is this enough? How can o ensure this is dealt with appropriately?

[PurpleNails Administrator in reply to Thatravers]

GP are not taught much about nutrients, but any out of range results will likely be red flagged by the lab. If deficient the GP is obliged to prescribe supplements. Always obtain you own copy of all result. If you are just within range your GP likely to deem it irrelevant but your levels need to be optimal.

I don’t agree that six monthly testing appropriate. You need more frequent monitoring, especially after any dose adjustments. Your hospital may arrange this schedule. I am seen 6 monthly at hospital but tested 6 weekly and results reviewed by a nurse specialist.

[Valarian in reply to Thatravers]

Given that you are on 30mg/day of cabimazole,you should be tested every 4-6 weeks until your thyroid levels (FT3 and FT4) are within range, otherwse your thyroid levels could come down and drop below the bottom of the range. The NICE CKS guidelines suggest every 6 weeks, if anything longer is suggested you could refer them to this cks.nice.org.uk/hyperthyroi....

Your FT4 level looks pretty high against all the ranges we generally see here, do you know what the range was ? (typically in brackets after the result).

Unless they definitely suspect a different cause, eg a 'hot'nodule, they should offer an antibody test to confim Graves' - TRAb or TSI. This is most likely to be a one-off. If the result is positive, the GP will understand this means Graves' although they may not be familiar with what constitutes particularly high levels *(for example). If it's negative, more investigation may be required and this is likely to require specialist intervention. GPs don't tend to see many hyper patients as we are usually referred straight to specialist care. They may not see the value of FT3 tests, although these are usually ordered every time (by the specialist) for Graves' patients, at least until their thyroid levels are stable and within range, as FT3 can be over range while FT4 is not. Because they are more accustomed to monitoring hypo patients, GPs may tend to look at results at a point in time - ie, if a result is within range, it's fine - whereas specialists (at least, the specialists I have seen) alwayslook at the trend upwards/downwards in relation to the dose of medication.

If this is Graves', you are likely to be on anti-thyroids for at least 12-18 months. As your thyroid levels come within range, they will either reduce ('titrate') the medication until the dose is somewhere areound 5mg/day and your thyroid levels are stable and within range, or keep the same dose but add in some levothyroxine, so keeping your natural thyroid production completely 'blocked' and 'replacing' it with synthetic hormone. At this stage they will stop the meds to see whether your Graves' is in remission (perhaps a 50% chance). If it isn't in remission, they will want to discuss alternative options including Radioactive Iodine treatment (RAI) or thyroidectomy, but it may also be possible to remain on a low dose of antithyroids indefinitely if your thyroid can be effectively controlled in this way. For now, I wouldn't worry too much about these options. You have plenty of time to research these and for now, really don't need the additional stress of considering options you may never need.

[Thatravers in reply to Valarian]

Hi there. Thanks for all that information - really useful. The normal range indicated on my results is 9.0 - 26.0

I wonder why it is so high? I have a swollen thyroid and that worries me.

I feel awful on the meds and have really bad headaches too. Will this improve.

Very much appreciate all the information you kind folk are providing me with.

[Valarian in reply to Thatravers]

The swollen thyroid often goes with being hyperthyroid, and may well resolve as your thyroid levels come down.

The same could apply to other symptoms, especially as your thyroid levels are so high. It isn’t uncommon for people with Graves’ to experience thyroid levels double the normal range or more, but it certainly isn’t comfortable. It can be difficult at this stage to unravel which symptoms are being caused by the hyper condition and which by the medication. With thyroid levels that high, no wonder you feel so awful. The good news is, they will come down and you will feel better. The bad news is, as the medication only impacts production of new hormone and can’t do anything to reduce existing stores, it may take up to eight weeks for the impact of the medication to become apparent.

Some leaflets on hyperthyroidism and the various associated conditions :

btf-thyroid.org/hyperthyroi...

btf-thyroid.org/thyroid-nod...

btf-thyroid.org/thyroiditis

[SlowDragon Administrator in reply to Thatravers]

Hyperthyroid

thyroiduk.org/hyperthyroid-...

Most common cause - Graves’ disease

thyroiduk.org/hyperthyroid-...

Hypothyroidism

thyroiduk.org/hypothyroid-b...

Most common cause - Hashimoto’s

thyroiduk.org/hypothyroid-b...

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms

Blood tests

thyroiduk.org/getting-a-dia...

Antibodies

thyroiduk.org/getting-a-dia...

[jimh111]

You have hyperthyroidism which means too much thyroid activity. This is usually caused by antibodies that attack your thyroid and cause it to secrete too much hormone. TSH stimulates the thyroid and is regulated by a feedback mechanism where thyroid hormones fT3 and fT4 suppress the TSH secretion. As your free T4 (fT4) is very high it is suppressing your TSH to make it very low. Hyperthyroidism can cause anxiety which adds to your symptoms.

Your thyroid is swollen because it is being asked to make too much hormone (probably by antibodies). It's also possible that the thyroid itself is inflamed and this is causing the high hormone levels.

An endocrinologist can check for antibodies that cause this.

The carbimazole will reduce your thyroid's hormone secretion. Propranolol is a beta blocker and prevents a heartbeat being too rapid (you will have a rapid pulse at the moment). It also has a side effect which is useful, it reduces the conversion of 'T4' to 'T3'. T3 is the active hormone so propranolol helps control the over-activity of the thyroid.

[Thatravers in reply to jimh111]

That all makes sense. Thank you for the explanation. 😊