Help?!: I don't know what to do...I'm just... - Thyroid UK

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Help?!

Fluffypip profile image
28 Replies

I don't know what to do...I'm just sitting around crying all the time. I recently became suddenly hyperthyroid.

4 weeks ago tsh 0.005 (0.2 -4) t3 8.5 (3.5-6.5) t4 44 (11-22.6) now tsh 0.01 t3 10 t4 38

Its been discovered that my neutrophils levels are sometimes low over years but this morning really low at 1.12. I also have a sore throat and mouth sores. I was put on carbimazole but stopped after 5 days due to sore throat. That was 2 weeks ago. Now my neutrophils are lower. I don't know what to do now. I don't know why my neutrophils are low and I don't know how my thyroid can be treated. I feel scared and hopeless.

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Fluffypip profile image
Fluffypip
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28 Replies
greygoose profile image
greygoose

Your low neutrophils suggest that you either have an infection, or an autoimmune disease. Have you had your TPO antibodies and Tg antibodies retested? It might be a good idea because they fluctuate all the time. And, just because they were negative yesterday, doesn't mean they will be negative tomorrow.

What did your doctor say about the neutrophils?

I see in one of your past posts that you were interested in RFA for your nodule. Did you see this post this morning?

healthunlocked.com/thyroidu...

Fluffypip profile image
Fluffypip in reply togreygoose

I think the thyroid needs to be well controlled for that procedure and mine isn't due to not being able to have meds because of the neutrophils. My levels have often been low over the years but I didn't know that before now. This is a new low. My throat /mouth is so sore! I have had antibodies tested a few times and they are always negative.

greygoose profile image
greygoose in reply toFluffypip

I really don't know anything about the procedure, maybe you should contact the OP - DearH - and ask her?

Are you sure the neutrophils stop you being treated?

Have you had an ultrasound of your thyroid? That might give you an indication about any damage done to the thyroid by autoimmune disease.

SlowDragon profile image
SlowDragonAdministrator

Have you had vitamin levels tested and BOTH TPO and TG thyroid antibodies tested

Hashimoto’s (autoimmune hypothyroid) frequently starts with transient hyperthyroid results and symptoms

For full Thyroid evaluation you need TSH, FT4 and FT3 tested

Also both TPO and TG thyroid antibodies tested at least once

Very important to test vitamin D, folate, ferritin and B12 at least once year minimum

About 90% of primary hypothyroidism is autoimmune thyroid disease, usually diagnosed by high thyroid antibodies

Autoimmune thyroid disease with goitre is Hashimoto’s

Autoimmune thyroid disease without goitre is Ord’s thyroiditis.

Both are autoimmune and generally called Hashimoto’s.

Low vitamin levels are extremely common when hypothyroid, especially with autoimmune thyroid disease wether it’s hyperthyroid or hypothyroid

20% of autoimmune thyroid patients never have high thyroid antibodies and ultrasound scan of thyroid can get diagnosis

In U.K. medics hardly ever refer to autoimmune thyroid disease as Hashimoto’s (or Ord’s thyroiditis)

Recommended that all thyroid blood tests early morning, ideally just before 9am, only drink water between waking and test

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip)

Private tests are available as NHS currently rarely tests Ft3 or all relevant vitamins

List of private testing options and money off codes

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

Medichecks Thyroid plus antibodies and vitamins

medichecks.com/products/adv...

Blue Horizon Thyroid Premium Gold includes antibodies, cortisol and vitamins

bluehorizonbloodtests.co.uk...

Only do private testing early Monday or Tuesday morning.

Link about thyroid blood tests

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

Link about Hashimoto’s

thyroiduk.org/hypothyroid-b...

Symptoms of hypothyroidism

thyroiduk.org/wp-content/up...

Tips on how to do DIY finger prick test

healthunlocked.com/thyroidu...

Medichecks and BH also offer private blood draw at clinic near you, or private nurse to your own home…..for an extra fee

Fluffypip profile image
Fluffypip in reply toSlowDragon

Hi yes thanks I've had both private and nhs tests. All thyriud tests were early morning in same conditions. I've had lots of antibody tests all negative. I have a few small nodules. My crp is normal, does this rule out thyroiditis?

SlowDragon profile image
SlowDragonAdministrator in reply toFluffypip

NHS only test thyroglobulin antibodies if TPO antibodies are high

Have you tested both privately

mayoclinic.org/diseases-con...

Chronic inflammation of the thyroid. Hashimoto's disease, a thyroid disorder, can cause thyroid inflammation and result in enlarged nodules. This often is associated with hypothyroidism.

Lalatoot profile image
Lalatoot

Things that give me a glimmer of hope when symptoms are debilitating areMusic.....

Writing down my feelings and symptoms...

Meditating using the app Insight Timer and the teacher davidji. It is free to use.

Being kind to myself.

Batty1 profile image
Batty1

Did Doctors have a diagnosis for your sore mouth and throat?

Fluffypip profile image
Fluffypip in reply toBatty1

No not so far

Batty1 profile image
Batty1 in reply toFluffypip

Im curious my sister has suffered with mouth sores that look like lacy skin.

Fluffypip profile image
Fluffypip in reply toBatty1

Oral lichen planus. You can Google it

Batty1 profile image
Batty1 in reply toFluffypip

Yes that’s it.

Fluffy1602 profile image
Fluffy1602

Hi,I had underactive thyroid, and was on thyroxine. Then my levels became "normal" and I was on no medication.

Next, like you, I became hyperthyroid and I had low neutrophils.

I was given carmibazole for eighteen months and was wary of taking it originally.

However, I am now on no medication as carmibazole did the trick.

Hope it does for you too 🙏

Fluffypip profile image
Fluffypip in reply toFluffy1602

So you went from hypo to hyper due to meds?

helvella profile image
helvellaAdministrator in reply toFluffypip

At the risk of getting it wrong, I think that is not the case.

There was a gap with no medication.

The hyperthyroidism simply happened and was not due to meds.

This is a pattern we have seen many times.

Fluffypip profile image
Fluffypip in reply tohelvella

This is interesting because for a year before discovering I had overactive thyroid issues I had a lot of unexplained symptoms that fit more with hypo but my tsh was normal. I've been negative for all antibodies so far though I have a history of autoimmune stuff. I was told you could go hyper then hypo but never the other way round

Fluffypip profile image
Fluffypip in reply toFluffy1602

Can you tell me about your neutrophil levels?

KatieG12 profile image
KatieG12

Hi Fluffypip, I don’t know if I am misunderstanding but it sounds like you are hyperthyroid. Carbimazole is used to restore normal thyroid levels, but one of the serious side effects is agranulocytosis, which you had the classic symptoms off. I know someone this happened to and they were switched to an alternative medication. There is only one other to try. Speak to your endo I’m sure they can advise.

High thyroid levels make everything feel stressful and awful. Wait until your levels are back to normal. Everything will feel much better and you will feel more able to decide what to do. Good luck, things will improve, this feeling is only temporary.

Fluffypip profile image
Fluffypip in reply toKatieG12

Unfortunately I can't take either of the meds due to my low neutrophil count.

KatieG12 profile image
KatieG12 in reply toFluffypip

Hopefully that is only temporary and now you’re off the meds things will turn a corner. I think if you’ve not had your options fully explained and you’re feeling very worried you should get back to your Doctor.

Are you allowed beta blockers? They block the effects of the high thyroid levels and can bring down the anxiety, which is caused by the high level of thyroid hormones.

Fluffypip profile image
Fluffypip in reply toKatieG12

I take betablockers. The endo has suggested going down alternative routes . I feel absolutely fine apart from the sore throat. Its just my numbers are high and need to come down. I'm starting acupuncture and herbs next week as I can't take the meds. The only alternative would be surgery.

Fluffy1602 profile image
Fluffy1602

I don't think it was caused by medication although at one point I was told I had been over medicated.I requested a referral to an endocrinologist as I had never seen a specialist before.

Following a nuclear scan nodules were discovered and I was told I have Graves disease and possibly a parathyroid problem.

At present I feel absolutely fine and have levels checked regularly.

I am carefully with my diet and try to do regular exercise.

Hope this information might help and reassure you.

Sophitje profile image
Sophitje

Hello, if your neutrophils are low and have symptoms of sore throat, you should stop carbimazole and talk to your doctor as soon as you can. Your doctor should have made that very clear when you started carbimazole? I had a reaction to carbi (but in my case the neutrophils were close to nil) and was admitted to hospital where they kept me while boosting my levels up. This reaction is very rare but can also be dangerous. It's called agranulocytosis. I did not have any sore throat but felt extremely tired. I got mouth sores too but a day later when they were already treating me in hospital (I had to stay 3 nights). Please be careful, stop the carbi until you talk to your doctor again. Best wishes

Fluffypip profile image
Fluffypip in reply toSophitje

Yes I'm aware of all this and carbimazole was stopped 2 weeks ago when sore throat started and I had blood checked lots of times. What did you do after your experience in terms of thyroid? What are your neutrophils now?

tattybogle profile image
tattybogle in reply toFluffypip

in case you weren't aware Fluffypip, you can read members previous post by going to their profile page ( click on their name it will take you there) Sophitje has written some of 'what happened next' in her most recent post. healthunlocked.com/thyroidu...

Fluffypip profile image
Fluffypip in reply totattybogle

Thats helpful! Thanks

Sophitje profile image
Sophitje

Sorry, i got confused as i read the thread further below quickly and there was messages from someone with similar pseudonym to yours. After that, i could not go back on any anti thyroid drugs at all so my thyroid was managed by lithium dosage. Only for a few weeks as it's not a long term option, until i had a full thyroidectomy. No regret on that front. I'm on thyroxine 75mcg and everything has been OK. This was March 2019. My first diagnosis for graves was in 2007, treated the first time successfully by block replace regimen (and no adverse reaction to carbimazole then). I relapsed in December 2018 and was only back on the carbimazole for a few weeks.

Fluffypip profile image
Fluffypip in reply toSophitje

I read your story and its scary how mild your symptoms were when you had granulocytosis. I can't tell what's wrong with me. After 5 days of carbimazole I had the sore throat which I've had now for nearly 3 weeks and antibiotics made no difference. My neutrophils at the time of sore throat were 1 8, 2 1, 2 .4 on 3 consecutive days no meds since. The other day my neutrophils were 1.1 then 2 days later, 1.6. I don't know what all this means...meanwhile I'm just very hyperthyroid, don't know why and no meds other than propranolol.

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