Newly diagnosed and confused

[Opposite]

Hello, thank you for having me.

I have been diagnosed with hyperthyroidism and due to administrative errors, have had limited treatment.

I am now under the care of Endocrinology but am struggling to understand my results.

Please could someone shed some light on what's happening?

Upon reflection, symptoms started in 2018. I am one of the unlucky ones who's hunger apparently outweighed my thyroid and gained 4 stone in 2 years that I have failed to shift. Since starting Carbimazole and Propranolol 5 weeks ago, I have lost 11lbs. Hence this username!

Symptoms:

Weight gain, increased appetite, heat intolerance and excessive sweating, hair loss, palpitations, fatigue, confusion, insomnia, decreased sense of smell

Now I am medicated, all these symtoms appear to be improving except fatigue. I have been off work for 3 weeks because I simply cannot stay awake for more than a few hours at a time. I also suffer intense nightmares, which I have had in the past and may be contributing.

Blood tests:

Serum Free Thyroxine

Range:11.1 - 22 pmol/L

Oct = 37.3

Jan = 14.4

Serum Alkaline Phosphatase

Range: 35 - 104 iu/L

Oct = 94

Jan = 52

I understand the range from context but everyone is discussing 'T' results and I don't understand how mine relate.

After doing some reading, I am also unsure what else should be checked. I already take iron and magnesium for anaemia and RLS. I sporadically take Vit D and Folic Acid when I remember!

Full list:

Carbimazole 20mg

Propranolol 20mg

Citalopram 20mg

Zopiclone 14mg sporadically

Iron & magnesium supplements

I am also restarting Dabagatran when my Hematology appointment comes through due to increased risk of clots after previous DVT and PE.

Thank you in advance.

[pennyannie]

Hello Opposite and welcome to the forum :

Can you please share with forum members your TSH, Free T3 and Free T4 readings and ranges at diagnosis and what antibodies were run and found positive and over range in your bloods ?

You should be able to find all this information out from your medical records held at your surgery and ask for printed copies or if you have online access to your medical records just look through and then, if you can share the details at diagnosis we will be better placed to advise as to what is going on.

Carbimazole is an Anti Thyroid drug and generally prescribed when there is a diagnosis of Graves Disease -- has this been mentioned to you ?

Graves is an auto immune disease for which there is no cure -

and you can have both stimulating and blocking antibodies fighting for control of your thyroid and experiencing extremes off symptoms - from hyper to hypo - and a bit like being on a roller coaster without any of the fun.

All the AT drug does is semi block you new daily thyroid hormone production to try and off set the extremes of symptoms being tolerated - while we wait for your immune system to calm back down - and quite why your immune system has been triggered to turn and attack your thyroid - the 64 million $ question.

Possible your dose of the AT drug needs adjusting - bloods should be rerun every 6-8 weeks with further titration of the AT drug where necessary while we wait for your immune system response to calm down and your thyroid reset itself without the need for any drugs.

If your T3 and T4 levels are unable to be controlled some patients are treated with Block & Replace whereby the AT drug dose is increased to fully block your new daily thyroid hormone production BUT a measured dose of T4 prescribed so your T3 and T4 do not fall too far through the ranges which causes the equally - and for some worse - symptoms of hypothyroidism.

The most recent research we have suggests the longer the patients stays on the AT drug the better the longer term outlook for the patient:

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

If your diagnosis is Graves Disease you might like to read around on Elaine Moore - elaine-moore.com

[Opposite in reply to pennyannie]

Thank you for your response.

I don't know what those results are, hence my question - the results I have are written exactly as I've posted above. I assume they relate to T3 and T4 but I don't know how to tell which is which.

No-one has mentioned Graves disease but my antibodies (ANA?) were checked in the past for other illnesses and were normal. I was told then that I do not have an autoimmune disease.

I have had one 10 minute phone consultation with the endocrinologist and that's it. They had my contact details wrong and discharged me for missing appointments I never received. I have now been booked back in for 21st March.

He told me I should have been on these medications from October, when my blood test results came back and I was at high risk of heart-attack without them. He seemed pleased with my latest blood test results and has prescribed a lower dose of 15mg of Carbimazole. I have to keep taking the Propranolol for now.

I will look into Graves disease further and continue to take the medication as prescribed, thank you.

I just need a better understanding of my blood test results. This is what the endocrinologist is going by.

Thanks again

[pennyannie in reply to Opposite]

Are these online results all you have ?

There is not enough information there on which to make a diagnosis -

Ok - so the Propranolol is a beta blocker and prescribed when symptoms are putting undue strain on your heart -

and the AT drug prescribed to semi block over range T3 and T4 blood tests results -

but without the first set of blood tests results at diagnosis

and without any further ' T ' for thyroid results and ranges -

there is very little information to comment on.

[Opposite in reply to pennyannie]

Okay, thank you. At least I'm not being completely dense in my lack of understanding.

Yes, that is all I have. They are in the results section of my GPs new patient system. I will request a printed copy of my test results instead.

From context, I think the first category is T4. That was 37 in October and I believe what panicked the consultant and is now 14, which appears to be in normal range.

I don't know what the other one is or if it has anything to do with T3. That appears to have been in range throughout, though has dropped significantly between tests.

I feel better. Whatever the cause, I know the carbimazole and Propranolol combination is doing its job. I am just so tired, I feel like I'll never function properly again!

I was also trying to conceive, which I have now stopped on GP advice. My hope is that I can be switched from Carbimazole to the other AT (I don't remember the name) so that when my levels are stable, I can continue trying. I am 35 so I don't have forever!

Thank you for taking the time to advise, I know now what to ask to see at least.

[pennyannie in reply to Opposite]

The other Anti Thyroid drug generally prescribed when Carbimazole is not tolerated or the patient pregnant is Propylthiouracil - PTU for short :

[pennyannie in reply to pennyannie]

All these results show is a range of T4 that goes from 11.10 - 22.00

In October your T4 was over range @ 37.30 and now in January in range @14.40

I don't know about Alkaline Phosphate but both results are ' in the range ' :

Reading on - it seems you have a lot going on - and I do not know the implications of these other health issues and drugs.

[Opposite in reply to pennyannie]

Yes, that is the other drug, thank you. I understand that one is safe to take while trying to conceive / pregnant.

I'm not sure why they picked carbimazole but they said I had thyrotoxicosis and I believe that is from the '37.3' result.

So I need to check T3, T4, and antibodies - thank you.

I have a blood test booked for Thursday so will make sure that's what they are checking and request a printed copy of all results.

[pennyannie in reply to pennyannie]

We need to see a T3 reading as that is the active thyroid hormone which causes all the symptoms - too high a T3 for you and you experience hyper type symptoms - just as too low a level of T3 for you and you experience hypo type symptoms -

There is more than one reason for your T4 to have ' gone over the range ' -

but only Graves Disease should be treated with an AT drug - as the high levels of T3 and T4 can keep rising putting undue pressure on your heart and Graves is considered life threatening if not treated and the treatment is with an Anti Thyroid drug.

The other AI thyroid disease is Hashimoto's and the over activity phase is transient with the T3 and T4 falling back down into range by themselves and longer term you become hypothyroid as this AI disease systematically destroys your own thyroid gland.

In the beginning it can be difficult to distinguish between these two AI diseases and why we need to know exactly which antibodies was found in your blood at diagnosis, which is the medical proof of a diagnosis and then the recommended drug is prescribed where necessary.

When ' hyper ' your metabolism runs very fast and now your metabolism will probably be too slow as your T4 is now well in the range and your T3 probably low -

and when one's metabolism isn't ' just right ' the core strength vitamins and minerals - those of ferritin, folate, B12 and vitamin D can nose dive down through the ranges as your body struggles to extract key nutrients from your food.

So suggest you also ask to have these core strength vitamins and minerals run as low levels will simply compound your ill health further and we can advise on levels when you get the results and ranges back as just being in a NHS range somewhere it not optimal - and where you need to be - and some ranges too wide to even be sensible.

You need to stop all vitamin and mineral supplements for around a week and then run the necessary blood tests so we see exactly what your body is holding rather than that just ingested.

[Opposite in reply to pennyannie]

That's very helpful, thank you.

Will they give me the tests I ask for? When I requested my thyroid be checked in the first place, I was denied and had to request a second opinion. Is there an appropriate way to request these tests?

Sorry for all the questions and please don't feel obligated to answer further, you've been great.

One way or another, I will request test results for:

T3 and T4 levels

Antibodies

Then, after a week or stopping supplements, I will request a test for:

ferritin, folate, B12 and vitamin D

Perhaps I have confused T3 and T4 and the 37.3 result was T3.

Thank you again.

[pennyannie in reply to Opposite]

Well - as for getting the blood tests - I get mine done privately once a year as do very many forum members - if you go into Thyroid UK the charity who supports this patient to patient forum there is a whole page dedicated to Private Blood Test companies ;

thyroiduk.org

There must be full thyroid bloods - a TSH, Free T3 and Free T4 in your medical records somewhere to have been prescribed an AT drug :

I now arrange a full thyroid blood panel yearly - it's around 10 /11 blood test results and ranges for the TSH, T3, T4 thyroid antibodies, inflammation, and ferritin, folate, B12 and vitamin D :

Many forum members order this as a starting point when they come on here asking for help and advice and when the results are back simply start a new post with the results and ranges and are then talked through what it all means and considered opinion offered as to their next steps back to better health.

There are 2 companies Medichecks and Blue Horizon, who between them, I think, cover the whole country offering a nurse home visit to draw your blood - at an additional cost - if this suits you best - by there are other options where you can go to have your blood drawn.

For thyroid blood tests we suggest arrange an early morning appointment by 10 am in the early part of the week as then the results should be back with you before the w/end - rather than running a blood test late in the week and it sitting in a lab over the w/end congealing.

There is a specific Graves antibody blood test - at around £100 - from Medichecks -

and yes, this should already have been run and be in your medical records already.

By all means start by making an appointment with your doctor and just ask for an explanation and copies of your blood test results at diagnosis and to include the antibody found positive and over range in your bloods and why you are taking the Anti thyroid drug

[Opposite in reply to pennyannie]

Thank you so much.

I will ask the Doctors and if I cannot get what I need from them, get them done privately.

The (second opinion) GP has been quite good throughout all this. They have been honest that it is above their skillset and have helped me fight for the specialist care from the hospital. Perhaps if I ask nicely, they'll give me the tests I need! Though they will obviously be indicative of how my body has responded to treatment, not what the levels were originally.

[pennyannie in reply to Opposite]

The original blood tests before starting treatment with the AT drug should be in your medical records held at the surgery and you have a legal right to see everything on your medical records -

First make an appointment and speak with the doctor and at least get printed copies of the original blood tests and ranges - they owe you at least this - and a lot more , by the sounds of it -

P.S. Are your eyes involved at all - sore, painful, dry, gritty or streaming, light sensitive - please just ensure any treatments you use are Preservative Free - even those prescribed.

[Opposite in reply to pennyannie]

I will ask for those, though I had already requested a copy of both sets of bloods and all I have available to me are the ones discussed above. I will investigate further.

My eyes are terrible. I stopped wearing make up because they stream all day. They are sensitive to light, wind, and cold. I have been reading up on Graves and I'm still stuck on the fact I was told I do not have an autoimmune disease. I'll discuss this further with my GP while I'm awaiting my endocrinology appointment.

I think I'll also begin a complaint about my lack of care so far.

[pennyannie in reply to Opposite]

Ok - if you contact the Thyroid Eye Disease Trust - tedct.org.uk - they can signpost you to specialist eye clinics throughout the country where I believe an eye specialist with an interest in Graves / TED - thyroid eye disease - alongside an endocrinologist work together to manage your health issues.

I just ' rocked up ' at Moorfields when in my 30's as sent there immediately by my optician when he looked behind my eyes and put me in a taxi - it was a 24 hour walk in service then - though that was 40 odd years ago - but eyes are very important and this a specialised field -

I think these outpost clinics are generally found attached to large teaching hospitals ?

[Opposite in reply to pennyannie]

Thank you very much, I will certainly look into this.

My mum suffers with dry eyes and hers water the same way, so there is a possibility it's just that.

I have a lot going on healthwise so it's hard to know what to attribute to what!

Thank you for the advice.

[SlowDragon Administrator in reply to Opposite]

I'm still stuck on the fact I was told I do not have an autoimmune disease.

As it doesn’t appear that medics have tested any thyroid antibodies it’s questionable as to whether they are correct

You needs TSI or Trab antibodies tested to confirm Graves’ disease - autoimmune HYPERTHYROID

TPO and TG antibodies for Hashimoto’s. Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

You can have mildly elevated TPO or TG antibodies with Graves’ disease too

It’s also possible (but rare) to have Hashimoto’s and Graves’ disease at same time

Link about thyroid blood tests

thyroiduk.org/testing/thyro...

Link about Graves’ disease

thyroiduk.org/hyperthyroid-...

Graves Disease antibodies test

medichecks.com/products/tsh...

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

[Opposite in reply to SlowDragon]

That's very interesting. I definitely don't fit the standard model of hyperthyroidism! I will do the reading you have suggested, thank you.