Need advice

[Helly75]

Hi, I'm new to all this & looking for aome advice . I was diagnosed with hyperthyroidism in October & was prescribed 10mg carbimazole I quickly went into hypothyroidism and was just told to stop the medication. I've been having some pretty horrible symptoms, burning stinging arms ,tingly face ,very sore neck and some difficult swallowing along with quite severe fatigue, I'm also crying a lot . My most recent letter says ft4 is 7.1 & tsh is 63.7, I have no idea what any of that means & Google just confuses me more . I'd appreciate any advice

[Jaydee1507 Administrator]

Welcome to the group.

Have you ever had any thyroid antibodies tested to determine if you have Hashimoto's? This would be TPO antibodies although privately you can test for Tg type.

How long have you been off carbimazole before this test? If it was a while then you might need to start Levothyroxine.

When was this test taken?

Your results show you are very hypothyroid. What did your Endo recommend as next step?

When hypo we get low stomach acid which means we cannot absorb vitamins well from our food, regardless of a great diet. For thyroid hormone to work well we need OPTIMAL levels of vitamins.

Have you recently or could you ask your GP to test levels of ferritin, folate, B12 & D3? Private tests are available, see link for companies offering private blood tests & discount codes, some offer a blood draw service at an extra cost. thyroiduk.org/testing/priva...

There is also a new company offering walk in& mail order blood tests in London, Kent, Sussex & Surrey areas. Check to see if there is a blood test company near you. onedaytests.com/products/ul...

Only do private tests on a Monday or Tuesday to avoid postal delays.

[Helly75 in reply to Jaydee1507]

Thanks for the reply , I've been off carbimazole just over 2 weeks & that's when the thyroid was last tested, it was repeated again yesterday but don't have the results yet . Folate & b12 are normal but I have low vitamin D . They actually kept me on a lower dose of carbimazole even after the thyroid function was low ,I will ask about the antibody test , I only have contact with endocrinologist secretary, I won't see a consultant for at least 9 months apparently, feeling very unwell & not sure what's normal with this condition

[Jaydee1507 Administrator in reply to Helly75]

With the results that you've posted I'm not surprised you're feeling very unwell. Do take it easy and cut yourself alot of slack.

As you've had tests run at the hospital you may have to get results from Endo's secretary, but worth getting the NHS app if you're in England and asking at GP reception for permission to se your results on that. It may not show hospital results though.

Exactly what were your vitamin results and ranges? They need to be high in range and not dragging at the bottom.

Vitamin D should be around 100 - 150. Buy one that includes vit K2 to help it go to your bones. Some are available in oil or you can take it with an oily meal for better absorption. Many members like the ‘Better You’ range of mouth sprays that contain both bit D & K2. Use this calculator to work out how much to take to get your level to 100-150. Most people need a minimum of 3,000iu per day.grassrootshealth.net/projec...

Make a new post when you get the new test results.

[Helly75 in reply to Jaydee1507]

Yes I have to ring the secretary on Thursday. I'm in Northern Ireland & don't think we have the nhs app here . My vit d was 32 ,not sure about folate but the b12 was 500 I think & gp said it was normal . I will update when I get the results, thank you for your replies

[pennyannie]

Hello Helly and welcome to the forum :

What symptoms were troubling you that prompted the visit to the doctor in October ?

Are you dealing with any other health issues ?

Are these symptoms after stopping the Carbimazole ?

When you speak with the endo secretary ask her for copies of all your blood test results and with the ranges -

these should be a TSH - T3 - T4 - and ask which antibodies were found positive and over range in your initial blood test - either / or TPO - TgAB - TSI - TRab - and / or a TSH Thyroid Receptor reading and the range used :

For context - a blood test needs to be seen against the ' accepted ' range - in order to know if it is too high / low and ranges vary throughout the country and dependant on the machinery used in the Laboratory.

Most people's blood test results will be within the range and considered ' normal ' -

So for example the TSH range is usually around 0.4 -4.50 - so we can see your TSH very high and shouting out - I'm not well - it reads as though you have had an allergic reaction to something and your thyroid now swollen -

So there are 2 main reasons for hyperthyroidism - Graves and Hashimoto's - both Auto Immune diseases - the difference being Graves is ' full on hyperthyroidism ' and treated with an Anti Thyroid drug such as Carbimazole -

whereas Hashimoto's presents as ' transient hyper type phases ' and is not treated with the AT drug as the thyroid hormones - T3/T4 - levels do not keep building higher and higher and fall back down into range themselves and the patient eventually becomes hypothyroid and needs thyroid hormone replacement.

In order to know if either of these AI diseases are the cause of this phase of ill health the initial blood is further analysed to see which antibodies were over the range and positive back in October -

I'm guessing that your antibody blood test is showing you with Hashimoto's and why you were told to come off the Carbimazole.

You might like to read around of the website of Dr Izabella Wentz who has Hashimoto's and writes as - thyroidpharmacist.com

and for Graves the most well rounded of all I researched is that of Elaine Moore - books and website - elaine-moore.com

[Helly75 in reply to pennyannie]

Hi, thanks for the reply , I had the blood test with others in September but didn't know until a letter arrived in October. I'd noticed lots of hair loss ,feeling sweaty ,shaky ,not sleeping & I was very anxious. I've been unwell for the last 6 years ,I've had myocarditis 3 times & had a near fatal heart attack/ cardiac arrest in may 24 ,my thyroid function was normal in may so somewhere between may & September it changed . Graves disease was ruled out but not sure about hashimotos

[pennyannie in reply to Helly75]

How was the Graves Disease ruled out ?

[Helly75 in reply to pennyannie]

A blood test was done while I was in hospital for something else & was sent elsewhere in the UK, apparently

[pennyannie in reply to Helly75]

So If Graves was ruled out - I presume the antibodies were run and medical evidence of TSH Thyroid Receptor s / TSI/TRab - were negative and why you were advised to stop taking the Carbimazole -

so the Laboratory would have continued with further thyroid antibody analysis to determine if you have Hashimoto's - and positive TPO or Tg antibodies ?

Since there is no immediate treatment for Hashimoto's maybe this is why you feel you're been left ' hanging ' - and you need to check in with your primary care provider ?

The medical evidence is within the analysis of the initial blood test and this is what you need to have access to - maybe talk to your doctor as he would likely have access to all the hospital paperwork ?

P.S. Maybe ' all this ' is related to the ' something else ' that was going on at the hospital at the same time - I can't say more from the limited information you have shared.

[Helly75 in reply to pennyannie]

I did mention above about heart issues , other than that I did have covid in July. I was kept in hospital for an mri because of headaches at the time .

[pennyannie in reply to Helly75]

Oh- ok - sorry then -

I've just been reading your posts on the British Heart Foundation forum - so I think your issues much more complicated than I first thought - though we still need to know if any antibodies were found positive in your initial blood test last October.

heart issues are common when with a malfunctioning thyroid - so I probably didn't think that through any further than a Graves or Hashimoto's diagnosis -

So hospitalised for an MRI because of headaches and had Covid in July :

Presume the MRI clear - have the headaches gone, and are you taking any other medications ?

[Helly75 in reply to pennyannie]

Yeah the heart stuff all happened first ,so over the last 6 years thyroid was always normal until after the heart attack, headaches have been with me almost 2 years now. I'm taking the cocktail of heart meds now so I was sort of suspicious that they could have possibly caused an issue but I can't be certain of that

[pennyannie in reply to Helly75]

I think it best to talk all this through with someone who knows your medical history and the cocktail of drugs you are taking -

We can help explain ' thyroid ' to you - if and when - you get a diagnosis - as you currently seem to be limbo - not knowing the results of this October blood test that was ' sent away ' :

Ideally we need to see a thyroid blood panel to detail at least a TSH +T3 + T4 + antibodies and an inflammation marker blood test result and ranges.

[Helly75 in reply to pennyannie]

Thankyou , I'm just new to thyroid issues and unsure if my symptoms are normal . I will get new / updated blood results tomorrow or Friday hopefully

[pennyannie in reply to Helly75]

OK then - maybe read around on the Thyroid UK website - thyroiduk.org

as this is the charity who support this patient to patient forum -

and I think I already shared these two researchers with you earlier today -

thyroidpharmacist.com and elaine-moore.com :

P.S. New information deserves a new question/post as we can all look back and see what was written before

[Helly75 in reply to pennyannie]

I will make an updated post as soon as I get the results , thank you for the links I will have a look

[SlowDragon Ambassador in reply to Helly75]

Hair loss often linked to low thyroid but also low iron/ferritin

Has GP done full iron panel including ferritin

[SlowDragon Ambassador]

Welcome to the forum

Graves’ disease (autoimmune hyperthyroid) should have been confirmed by testing TSI or Trab antibodies before starting on Carbimazole

Have you had any thyroid antibodies tested?

Your GP should also test TPO and TG antibodies for Hashimoto’s. Autoimmune hypothyroid disease

Hashimoto’s frequently starts with transient hyperthyroid results and symptoms before becoming increasingly hypothyroid

We see a small but steady number of hashimoto’s patients who are misdiagnosed as Graves’ disease if all antibodies aren’t tested

With TSH of 63 you are now very hypothyroid and need starting on levothyroxine this week

Standard starter dose levothyroxine is 50mcg but with your heart issues they may start you on 25mcg

Dose is increased SLOWLY upwards over next 12-18 months until TSH below 2 and Ft4 and Ft3 at good levels, typically approximately 70% through range…..and all symptoms resolved

Bloods are retested 6-8 weeks after each dose change (or brand change) in levothyroxine

Also ESSENTIAL to get vitamin D, folate, ferritin and B12 levels tested at least annually and maintain good levels by supplements if necessary

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease

Assuming your hypothyroidism is confirmed as autoimmune you also need coeliac blood test

Your myocarditis may be linked to autoimmune thyroid disease

sciencedirect.com/science/a...

[Helly75 in reply to SlowDragon]

Thank you for the information, the test for graves disease was done in October & was negative so they've only done the test for hashimotos antibodies just over 2 weeks ago ,I only have contact with the endo secretary & it's unlikely she would tell me those results but I have to contact them tomorrow or Friday for updated thyroid function results so I will try and get more information then

[SlowDragon Ambassador in reply to Helly75]

So seems mad that they started you on Carbimazole as Graves’ disease antibodies were negative

Presumably Ft4 and Ft3 must have been very high

In early stage Hashimoto’s large amounts of thyroid hormone can get released as thyroid cells breakdown under autoimmune attack. Thyroid becomes increasingly damaged and more hypothyroid after this

If you are on a cocktail of other drugs for your heart these may be affecting thyroid or vitamin levels

What are you currently taking

[Helly75 in reply to SlowDragon]

Yes the levels were high ,they gave me carbimazole straight away but the test for graves disease took 4 weeks to come back that was in October, nobody ever told me the results until an Ed Dr went and found out for me ! I'm taking bisoprolol, ticagrelor ,asprin, colchicine, rosuvastatin & esomeprozole. I feel so unwell ,hardly able to stay out of bed this last few weeks ,so fatigued & very weepy ,burning arms & just generally unwell

[SlowDragon Ambassador in reply to Helly75]

you should be seeing GP tomorrow, or certainly this week

esomeprozole is a PPI

all PPI will tend to lower vitamin levels

You need to be taking PPI to counteract aspirins affect on stomach lining

GP should be testing B12, magnesium, folate, ferritin and vitamin D

gov.uk/drug-safety-update/p...

pharmacytimes.com/publicati...

PPI and increased risk T2 diabetes

gut.bmj.com/content/early/2...

Iron Deficiency and PPI

medpagetoday.com/resource-c...

[Helly75 in reply to SlowDragon]

The only thing that's off at the minute is vitamin D but have had iron problems in the past & needed infusions, I've always blamed the ppi ,no other cause was ever found

[nightingale-56 in reply to SlowDragon]

SlowDragon , just thought you might like to know that the webmd link leads to a reproduction page. Thanks for all the other links though.

[SlowDragon Ambassador in reply to nightingale-56]

How odd…..thanks will edit

[SlowDragon Ambassador in reply to nightingale-56]

here’s a similar page discussing low B12 and PPI

pmc.ncbi.nlm.nih.gov/articl...