Health anxiety and agranulocytosis

[wavingordrowning]

Hi, i had my son 8mths ago and since then i have had severe anxiety and panic attacks. I have had anxiety for the past 10yrs but nothing like this.

Turns out my tsh is supressed but my t3 and t4 are normal. The same thing happened after i had my daughter 5yrs ago but it balanced itself back out after 9mths with no treatment.

My tsh is lower this time however and does not appear to be improving any. I went to an endo apt and the Dr diagnoised Postpartum Thyroiditis. he said he would arrange an ultrasound, that was all.

One week later i received a letter from the endo dr advising that i should start 5mg carbimozole which my gp would prescribe.

When i went to my gp she said the endo consultant should really have advised me about the medication. She then went on to advise me about agranulocytosis, symptoms etc.

I am now terrifed! I have health anxiety. I did not have this before having my son but between already being an anxious person and the thyroid problem it has kicked my anxiety into hyperdrive.

I have taken 4 tablets so far, i know it is a very small dose and the chances of agranulocytosis are rare but i cant stop thinking about it. It is at the point i am considering stopping the tablets.

any advice from anyone with current or previous carbimozole experience would be greatly appreciated (hand hold)

[Lalatoot]

I was on carbimazole for 5 years. Started on on 40mg and then spent years on 5mg. When our thyroid hormones are mixed up we don't think rationally. I had anxiety and panic attacks. It was a terrible way to live. You will get through this. Just take a little step at a time.

[wavingordrowning in reply to Lalatoot]

Thank you for your reply. You're right it is very hard. Feel like i have had more bad days than good in the past 8mths health wise. It has totally ruined my maternity leave. Small steps is good advice, my mind just runs away

[Lalatoot in reply to wavingordrowning]

Music helped me a lot. Calm twinkling music. Often lay in bed at night with one ear plugged into an iPod; the other on my pillow. Helped take the edge of the anxiety and allowed me to drift off.

[greygoose]

If your FT4 and FT3 are in-range, I think you should question why this endo is prescribing carbimazole. To bring the TSH up? I don't think that's even likely to work - except by making you very hypo. Did he test any antibodies? Have you had an antibodies tested?

Can you tell us what your FT4 and FT3 are? It's the FT3 the most important number.

As for 'health anxiety', I can imagine you are anxious - who wouldn't be under the circumstances - but 'health anxiety'? Do you know that's the new name for hypochondria? Do you really think you're a hypochondriac? I haven't heard you complain about anything - except your endos questionable decision.

Don't let them stick a label on you. Anxiety is a symptom of something. Health anxiety is your doctor judging you. Please don't confuse the two. Start taking control of your health. If you don't want to take these tablets, tell them you don't want to and ask for proof that you actually need to. Seems to me your endo is taking an easy way out. Question it.

[wavingordrowning in reply to greygoose]

He did test my antibodies. He said he provided the results of this on the letter he sent to my gp but neither her or i could find this on the letter. The endo was abrupt, rude and condescending tbh.

he is a private consultant and had no empathy at all to the situation.

I called him after i received the letter and went to my gp to pick up the carbimozole script. I wanted to know his logic behind giving me the tablets. His secretary said he would call me back, which he did and all he done was tell me that he is a very busy man and doesnt have time to phone me to discuss such trivial matters and this was his opinion if i dont want to take the tablets then dont, thats up to me. I ended up hanging up on him.

I have had anxiety for many years. When this thyroid problem started 8mths ago i didnt know what it was so when my heart started racing like never before i thought i was dying, ive phoned ambulances, when to hospitals, had ecgs, bloods tests, xrays, etc i couldnt stop thinking there was something wrong, thats where the health anxiety came from, i am dealing with that now also. I am on anti depressants and speaking to someone regarding this.

I dont have my levels to hand. I do have a copy of them, I will update tomorrow when i have them

[greygoose in reply to wavingordrowning]

Sounds like an average endo to me. lol They're a special breed! And, his rudeness and abruptness was probably to cover the fact that he was out of his depth. I think he knows he made a mistake and that's why he wouldn't discuss it. And, it's possible that he 'forgot' to test the antibodies and that's why you can't find them. But, post everything you've got and let's have a look. You never know what names they're going to use.

It's terrible that a so-called specialist should have so little regard for his patients well-being. If he thinks it doesn't matter if you take them or not, personally, I wouldn't take them.

Having said that, regards the letter, I know how they can be complete works of fiction! And, you don't know if they've muddled you up with someone else or just made it up as they went along. Last time I saw a cardiologist, he dictated his notes into a dictaphone in front of me. But, the letter bore no resemblance to anything he'd said! It's a mystery.

PS Can you see someone else?

[greygoose in reply to greygoose]

But, to go back to the anxiety, you body knows when there's a problem with the thyroid long before anything shows up in bloods. Anxiety is a hypo symptom. But, don't confuse anxiety about your health with health anxiety. They're two different things.

[wavingordrowning in reply to greygoose]

So i do not have my bloods to hand as the endo took them. should have made a copy, or even wrote it down.

I do remember that my tsh level was < 0.05.

I have the letter however that the endo sent to my gp after he seen me which states.... 'tsh is somewhat supressed which has persisted in recent blood tests done in Sept. I note t3 is at the upper end of normal and free t4 is normal'

'I have explained that she almost certainly has autoimmune thyroid disease (which he did not explain at all! i dont even know what that means??) It appears the flare up is settling...i have updated thyroid function and thyroid antibodies today....(not mention at all of what these were???)

I have requested and ultrasound.

Her tsh remains suppressed albeit t4 and t3 levels are normal. I would suggest trying her on a small dose of carbimozole 5mg daily. I shall review her back in 4 weeks time for a repeat check.

[greygoose in reply to wavingordrowning]

Yes, pity you didn't duplicate your results. I got caught like that, too. Handed the endo my results, never saw them again. And, at the endo of the appointment I was so flustered it never occurred to me to ask for them back. But, we learn by experience!

I think he means you have Hashi's, which UK doctors insist on calling 'Autoimmune Thyroiditis'. Hashi's can swing between high levels and low levels, and it looks like that blood test caught you coming down from high levels. The TSH level moves more slowly than the Frees, so that would still be suppressed whilst the Frees have gone back into range. But, carbimazole is NOT the right treatment for Hashi's. Stupid man.

[wavingordrowning in reply to greygoose]

Ok so I managed to obtain the actually test numbers from the endo

[greygoose in reply to wavingordrowning]

OK, so have you posted them somewhere? With the ranges?

[wavingordrowning in reply to greygoose]

I have posted below. thanks 😊

[Hidden in reply to greygoose]

My husband had somebody else’s letter entirely although to be fair he did live in the same flats.

[greygoose in reply to Hidden]

Not good enough, is it!

[Hidden in reply to greygoose]

Not when we had paid £180 to get the right letter!

[greygoose in reply to Hidden]

[Hidden in reply to wavingordrowning]

No wonder you are anxious, first with all those horrible symptoms and then this awful Endo. What a dreadful attitude to have, why choose to become a dr with an attitude like that ?

If I were you, I’d start again. Go to your GP, say you’d like a full blood test, with all the thyroid tests, get the results and post them on here. You’ll then be able to go through the results with your GP and get the views from knowledgeable people here.

As well as listening to music you could try some hypnotherapy—- free on YouTube. Just search hypnosis for sleep and anxiety, I can recommend Michael Sealey. I’ve been using his channel for the last couple of months and I’m sleeping better, just the odd bad night and generally feel calmer.

I’m sorry this has happened to you at a time you should be enjoying your new baby and your maternity leave, life’s very unfair at times.

[wavingordrowning in reply to Hidden]

Thanks for your kind comment. I had 3 sets of bloods taken since March this year. I gave them all to the endo and didnt even make a note or copy which was silly of me now thinking about it.

The only thing i can remember is my tsh level was < 0.05. I didnt pay much attention to the t3 & t4 as they said they were within normal range.

My gp is amazing and has been with me every step of the way, she would have been quite happy to monitor me without medication and see if my levels balanced out in the next 3-6mths.

Its not the medication either that im bothered about, its the agranulocytosis that is keeping me up at night, im terrified incase it happens, it is the main source of my anxiety at the moment.

Dont know whether to just stop the tablets and see if it does correct on its own? I dont take beta blockers as i previously had a bad reaction to them.

[Hidden in reply to wavingordrowning]

You can get copies of your blood test results. Just ask at surgery for them.

I think if you see your GP and talk over the medication you can come to a decision together. If you’re going to be worried so much by the effects of a med, it’s not really worth taking it. Being responsible for two young children, you’re bound to worry.

Good luck, I hope you get it sorted.

[wavingordrowning in reply to Hidden]

thank you. i did speak to my gp again about this yesterday, she is well aware of my anxiety history. she said she has never seen a case of agranulocytosis in her career. also it is extremely rare, she agreed with the endo to continue the carbimozole, so thats currently what im doing 🤷‍♀️

[sarosent in reply to wavingordrowning]

If your T3 & T4 are in range, I do not understand why they would prescribe carbimozole.

If you had anxiety after your last baby, and are having it again, I would look into a hormone imbalance for the cause of that, i.e. progesterone too low, instead of taking the carbimozole.

Dr. sounds like he doesn't want to look into anything further, like most of them. Just take this pill and go away.

Also what antidepressant are you on? Many of them act on serotonin and for some of us, too much serotonin actually causes more anxiety.

forefronthealth.com/hypothy...

[wavingordrowning in reply to sarosent]

I am on citalopram 20mg.

I am new to all of this but judging from the responses i have had to this post i shouldnt be on the carb? 🤔 i will be back to the gp on Monday by the looks of it to once again discuss this further.

If the endo had actually given me the time of day the other day when he phoned me i would have been able to ask these questions.

His secretary actually gave me his email address, maybe i should contact him. He said it wad normal practice to prescribe a small does of this medication if my tsh was suppressed 🤔

[Hidden in reply to wavingordrowning]

Hi there. Have you looked at the government yellow card website drugs profile analysis? The drug you mentioned is listed with graphs of side effects. It is a report system but consultants have to accept a report. If you had a test in September you could ask for a print out and a full test as your private consultant does not have to refer test results to nhs. It's lucky you have a good G.P. Expect you have been advised about gluten intolerance with thyroid problems . If not you can have tests for food intolerance on nhs as gluten is in all grains including wheat rye oats and barley. Gluten can be part of autoimmune disease and affect the body. As you have results to show your thyroid antigens are raised this might be one part of the puzzle. If you have not had other tests for oestrogen and progesterone levels then may be you can have some tests to see if the anxiety is endocrine related to gynaecology. If you are fearful of the tablets then may be you should pause and get the print out for blood tests for thyroid iron ferritin and vitamin d. B12 and B vitamins are essential to mental health too. Sure if these are just normal rather than optimal results might highlight deficiencies. Hi back to nhs for queries.

[wavingordrowning in reply to Hidden]

These are my numbers from the endo bloods from 1st Oct if you could have a look

TSH <0.01 (0.27 - 4.20)

T3 2.1 (1.3 - 3.1)

T4 17 (12.0 - 22.0)

Thyroid receptor antibodies

<0.30 (0 - 0.80)

[wavingordrowning in reply to Hidden]

Also my gp has advised all other levels at fine. Have not had female hormones tested, and never been advised re gluten 😮

[Hidden in reply to wavingordrowning]

My daughter had post natal hyperthyroid. This was temporary but then changed to hypothyroid. She has been on levothyroxine on the same dose and has been ok but has some ovarian cysts and other problems but these are not treated as part of being hypothyroid .

A day after giving birth progesterone levels go down so anxiety and depression may be hormonally related. All the problems with breast milk, broken night's sleep can add to your problems. Do hope you are getting some rest and help and can ask your pharmacist for some iron and vitamin supplements. When the baby can go through the night without a feed it helps you cope. Take care.

[wavingordrowning in reply to Hidden]

thank you x

[SlowDragon Administrator]

Suggest you get full Thyroid and vitamin testing privately

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested for Hashimoto's (and Graves' disease) .

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) diagnosed by raised Thyroid antibodies

Getting vitamins optimal can help reduce symptoms

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 .

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies or all vitamins

thyroiduk.org.uk/tuk/testin...

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

Private testing for suspected Graves - TSI or TRab antibodies

medichecks.com/thyroid-func...

Trying strictly gluten free diet can help with both Hashimoto's and Graves' disease . Gluten free diet can also reduce anxiety

[wavingordrowning in reply to SlowDragon]

Ok so I managed to obtain the actually test numbers from the endo

[HLAB35]

No need to be on carbimazole during Hashi's flares. Carbimazole is to block thyroid hormone and your pituitary is the only thing out of range. Assuming it's Hashi's, what is likely to happen, be warned, is that your pituitary will remain low for a while and your t4 levels will drop accordingly to a point where you become hypo as there is less to convert to t3.

Still assuming it's Hashi's (antibody labs are vital) the best advice I can offer is to start using some magnesium (malate, taurate glycinate, or citrate - you'll probably have to experiment a bit to find one you like) for the anxiety and adrenal exhaustion you can get from a dodgy thyroid (which can be taken in the afternoon and in the evening). Magnesium won't interfere with labs for other vitamins, it greatly enhances vitamin d uptake and it's probably the safest mineral to take as excess is excreted through the kidneys (but check contraindications on any meds such as blood thinners which I doubt you're on).

Plus, take a good quality vitamin C with bioflavanoids at breakfast (also for the adrenals); absolutely check your levels of vitamin D (being low in this will cause anxiety and depression), b12, folate, iron and Ferritin the next time you have a thyroid panel done. Read Thyroid UK's list of recommended vitamins and minerals.... I suspect you may also benefit from zinc and b6 (as p5p) and evening primrose - all seem to keep anxiety at bay in me!

(As an aside, there is an anxiety condition called pyroluria that is helped by taking zinc, b6 and evening primrose. See link. )

www-goodtherapy-org.cdn.amp...

A suppressed TSH will mean that your adrenals will try to compensate and that can be very problematic for your body and brain, so supporting adrenals now will make things easier when you may start taking Levo at some point down the line. Read up on how to support the adrenals with diet, routine, appropriate exercise and supplements.

[wavingordrowning in reply to HLAB35]

Thank you for your comment, it has given me a lot to think about.

So just so im clear cause I have never been told this....carb will block thyroid hormones and not increase tsh?

What will increase tsh solely without messing about with my other levels?

[HLAB35 in reply to wavingordrowning]

When thyroid hormones get too low, the pituitary will pick this up and raise TSH again..... That's the theory that they teach to Medical students. So, doctors assume that all they need to do is monitor and control TSH.... However, this is over simplistic and when there is a high level of inflammation, antibody interference and problems with cortisol the messages between brain and thyroid can get confused and fine tuning TSH is unreliable*.

If you have definitely confirmed Hashi's (not Graves) and continue with carbimazole you can end up with below range t4 and t3 which'll completely floor you energywise just to satisfy their TSH obsession. Carbimazole is not recommended for Hashi's ( see Grey Goose reply).

N.B. To avoid further antibody attacks that give you these 'hyper' swings, going gluten free or supplementing selenium have been done by people like myself and others on this forum.

*In summary, Carbimazole will indirectly raise TSH, but there can be some considerable delay, by which time t4 and t3 can be very low indeed. It is impossible to control the TSH in isolation.

[wavingordrowning in reply to HLAB35]

Ok so I managed to obtain the actually test numbers from the endo

[wavingordrowning]

Ok so I managed to obtain the actually test numbers from the endo

Would appreciate any insight if someone would be able to have a look...

TSH <0.01 (0.27 - 4.20)

T3 2.1 (1.3 - 3.1)

T4 17 (12.0 - 22.0)

Thyroid receptor antibodies

<0.30 (0 - 0.80)

[HLAB35 in reply to wavingordrowning]

I'd start a new post with this result, but make sure to mention your current meds.

[greygoose in reply to wavingordrowning]

Okay! So, your TSH is suppressed, yes, but that is the least important number. Your FT4 is exactly mid-range, and your FT3 slightly below mid-range, so no way are you hyper and you should not be taking carbi. Carbi will lower your FT4/3 even further, making you quite ill, as HLAB35 explained.

The antibodies he tested are for Grave's (hyperthyroidism) but they are negative. He did not test for Hashi's. Obviously an endo that doesn't know much about thyroid and just assumes a suppressed TSH means the patient has Grave's. It doesn't.

So, you need to go back to your doctor, who obviously doesn't know much about this either, and point all this out to her, and ask her to test for Hashi's. She can do that. I think it's irresponsible of her to tell you to continue the carbi having seen these results.

[wavingordrowning in reply to greygoose]

thank you so much!! i actually stopped taking the carbi on my own on sunday night, havent touched them since. Based on what I was told in this forum, also my anxiety was through the roof with not only the thought of agranulocytosis but also the thought of possibly not needing to take these tablets and them then making me worse.

What test do they need to run for hashi's? 🤔

[wavingordrowning in reply to wavingordrowning]

ps I only received these results in the post today, the endo did not even provide these numbers to my gp before prescribing the carbi!

[greygoose in reply to wavingordrowning]

Thyroid Peroxidase Antibodies - or TPOab. There is another one - TgAB - but the NHS rarely does it. So, see if you can get the TPOab first.

[wavingordrowning]

Really! that is horrible. i am shocked at the level of anxiety attached to this condition. i have felt very much alone with my anxiety, thinking its been me going crazy, wondering how its got so bad then discover its related to my thtroid.

how you feeling now anxiety wise?