I think I could be going from Graves/hyper to hypo - Thyroid UK

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I think I could be going from Graves/hyper to hypo

Bubba28 profile image

Hi all

I have just seen the GP as having so many symptoms at the moment and she told me what the thyroid bloods were from the consultant. I haven’t got ranges as I saw them on the screen.

My TSH is now 0.99 which is actually in range, my T4 is in range but lower end and my T3 is now 2.7 below range. So I am really confused, why am I still taking Carbimazole 5mg? Surely I am now heading if not already hypo now?

On top of that the GP thinks that I have started menopause too!

No wonder I am feeling so crap!!

Any advice much appreciated. Thanks in advance x

32 Replies

Ask at reception for a print-out of your results, the ranges will be on it. It is your legal right to have a copy.

But, yes, with an FT4 below range, you are hypo. Although it's doubtful that your doctor will think so because he probably only looks at the TSH, and that is euthyroid.

And, yes, that is why you are feeling bad. T3 is the active hormone that causes symptoms when it is too high or too low. Yours is much too low.

Bubba28 profile image
Bubba28 in reply to greygoose

Thank you. Yes I was worried that it was going a bit too far as the results before T3 and T4 were both in range but lower end. T4 is in range but low end. T3 is below range but TSH is now normal. Really not sure about continuing on Carbimazole as it could make me poorly

greygoose profile image
greygoose in reply to Bubba28

It will make you poorly, that's for sure, with an under-range FT3 - as I explained. But, you can't just stop it cold turkey, you have to gradually reduce it.

How was your Grave's diagnosed? Did you have TRAB or TSI antibodies tested?

Bubba28 profile image
Bubba28 in reply to greygoose

Yes I can’t remember which one but one of them was positive but not majorly so. I have started to take a tablet every other day as I don’t want to feel worse than I do now. The Consultant arranged a telephone follow up in Jan when he said he hopes I would have gone into remission. But continuing treatment as I am I think I would just be majorly underactive by then. More bloods on 7 October though

Hello Bubba ;

Looking back at your previous post I see your T4 has never been over range and your T3 over range just once by some very small margin and at the time you were being considered as dealing with arthritis and these thyroid tests were a complete surprise.

Graves generally presents with very high levels of both T3 and T4 and takes you to the doctor and is considered life threatening if not medicated.

Anti thyroid drugs are prescribed to block these high levels of T3 and T4 rising any further and slowly over time the T3 and T4 fall back into range.

It now looks as though your levels have fallen too far down the range and you are experiencing the other end of the spectrum and hypothyroid symptoms.

Hyperthyroid and hypothyroid are the 2 extreme ends of the same T3 stick - too high a level of T3 for you and you may experience symptoms of hyperthyroidism just as too low a level of T3 for you and will will experience the equally disabling symptoms of hypothyroidism.

Once your T3 and T4 are back in range the AT drug should be titrated down as otherwise your levels will continue to fall into hypothyroidism.

If you go into the Thyroid uk website who are the charity who support this forum you will see a list there of both hyper and hypo type symptoms - though it can get confusing as some symptoms are experienced in both thyroid conditions.

Do you have the results of which antibody was over range and positive - for Graves you need to be looking at either a TSI ( a thyroid stimulating ) or a TR ab ( a thyroid receptor blocking ) being over range and positive.

What, if any symptoms were you dealing with, as it seems to me, this reaction to one isolated blood test result a little too much too soon and would suggest you now need to reduce or come off the AT medication and see how you go.

I'm with Graves post RAI thyroid ablation and now manage lingering Graves, thyroid eye disease and hypothyroidism and self medicating as I found no help nor understanding of my health issues after thyroid ablation.

It was the Graves antibodies that I had but it wasn’t majorly raised. I thought the same that although I was only put on 5mg it seems dangerous to ask me to continue if my T3 is now lower than range. I weirdly had weight gain but that actually seems quite common on a couple of support groups I have joined. I was and and still am losing hair, still struggling with weight, had a racing pulse which is much better now but I am taking propranolol. Also anxiety, hand shake and insomnia. At the moment I am getting bad headaches and so tired all the time. Feel so bloated and uncomfortable too. My GP is testing a few things just to be on the safe side though as she is really thorough. But she said once thyroid issues have reached the consultant stage it is above her levels of knowledge which I get. Can’t understand why the Consultant is continuing treatment as surely T3 and T4 will reduce further. Yes TSH is normal now but I certainly don’t feel well for it!!

pennyannie profile image
pennyannie in reply to Bubba28

The TSH is of no real relevance once on the AT drug -

it's a bit like being put on automatic pilot as the endocrinologist has control of your metabolism through the dose of Carbimazole being prescribed.

Ok, so you are experiencing some typical Graves symptoms but your T3 and T4 are now in range :

The Propranolol is a beta blocker and should ease the palpitations and racing pulse.

There are 2 Graves antibodies, one stimulates whilst the other blocks.

At times they can both be active, which sounds a bit like where you are regarding symptoms, though your levels being so low might be the cause of some of these symptoms.

My symptoms were insomnia, dry gritty eyes and exhaustion and everybody's Graves seems to be unique to them. It is said to be a stress anxiety driven auto immune disease and there is likely some genetic predisposition maybe a generation away from you with someone with a thyroid auto immune disease.

Graves can be triggered by a sudden shock to the system like a car accident or the unexpected death of a loved one - I was physically threatened and verbally abused by a man I took on as my assistant manager.

I only learnt about my Graves 10 years too late for me, and after RAI thyroid ablation when I became really poorly from this treatment though have had no acknowledgement nor help through the NHS.

You might like to dip into Elaine Moore's Graves Disease Foundation website as Elaine too has Graves and finding no help with her condition started researching Graves at the beginning of this century.

It is a poorly understood and badly treated AI disease for which mainstream medical do not really have any answers.

Bubba28 profile image
Bubba28 in reply to pennyannie

Thank you so much. Oh yes I get the gritty eyes. Interesting you say that because I lost my Dad very suddenly a few years ago and my daughter has suffered really badly with anxiety for the past two years so I have been helping her and not had time to think about myself. I believe the stress and grief did cause it. T3 is under range now x

pennyannie profile image
pennyannie in reply to Bubba28

Sorry to read that but yes, Graves can manifest this way.

It's suggested that you find " you time for you " and to be selfish and do what you want to do ?

Rings any bells there too ?

Relaxation is all important and choosing to do things that you enjoy .

You can buy OTC products for your eyes if the Carbimazole doesn't relieve the symptoms - just ensure that whatever lotion, potion or drops you use that they are all preservative free.

You may find you need to swop products from time to time.

Bubba28 profile image
Bubba28 in reply to pennyannie

To be honest I find it really hard to switch off, my mind goes at 100 mph constantly!! However I am always putting everyone else first and rarely just relax

pennyannie profile image
pennyannie in reply to Bubba28

Ditto - another personality trait I recognise :

Bubba28 profile image
Bubba28 in reply to pennyannie

I really need to change that though!!

pennyannie profile image
pennyannie in reply to Bubba28

Good luck with that !!

I know it's difficult as people know you and expect the " Bubba they love and know " ;

Small steps can make a massive difference - cut yourself some slack, and listen to your favourite music when you want to :

Selfishness is hard when you're of a giving nature :

I now need to turn this laptop off - 2 hours too late for me really - as otherwise I can't sleep and must now watch silly TV programmes to stop my brain going into overdrive and me overthinking everything I've written on here today.

Bubba28 profile image
Bubba28 in reply to pennyannie

Well thank you, your advice is much appreciated x

Buddy195 profile image
Buddy195 in reply to Bubba28

Like pennyannie I fully recognise those traits. I was diagnosed as having Graves by my Endo, but antibodies now show Hashimotos. I also have TED and gritty eyes were one of my first symptoms, so please check with your optician if you have any concerns regarding your eyes. I’d also recommend preservative free eye drops to help with grittiness, such as HycoSan or Hyloforte. In addition, I would take a selenium supplement, as this has helped many with mild thyroid eye disease.

Bubba28 profile image
Bubba28 in reply to Buddy195

Oh really, the optician has mentioned my eyes look a bit dry for the past few years and advised eye drops but wasn’t overly concerned. So maybe I actually have had this for longer than I realised x

Buddy195 profile image
Buddy195 in reply to Bubba28

Lots of people get dry eyes, which can be treated with drops, but it’s always good to get them tested to check. In my case, I had other symptoms than grittiness (eg swelling, blurred vision, discomfort around bright lights), which led to investigations for TED.

Looking at previous post you had slightly over range FT3, normal FT4 suppressed TSH.

You mention you had TSI tested but never clarified your results. I think you should obtain these now. If they are negative you need to investigate you unusual results, ask for a thyroid scan. Your results do not scream Graves. I had similar results in 2014. it wasn’t followed up so wasn’t treated for 4 more years. By which time my FT3 was nearly double the norm, FT4 borderline high. TSH suppressed, this was caused by a nodule.

Usually you should be tested after 6 weeks. Was this your first test since starting? It’s driven your levels down. I think you need a dose adjustment. Either take every other day or split pill otherwise it may continue to reduce the level albeit at a lesser rate. Either way it’s currently below range and that should be prevented. Discuss with your doctor.

Bubba28 profile image
Bubba28 in reply to PurpleNails

Thank you. Yes my antibodies were raised but not hugely. Consultant hasn’t even suggested a thyroid scan xx

PurpleNails profile image
PurpleNails in reply to Bubba28

Propranolol also had anti thyroid element. Were you taking already or was it prescribed alongside carbimazole.

I was made quite I’ll when the specialist said “oh stop taking now “ after 2 month on 40mg x3 per day. Had migraines, still take low dose.

Bubba28 profile image
Bubba28 in reply to PurpleNails

I was taking propranolol for anxiety when needed. Ah maybe that is what is causing the headaches as I have started to take carb every other day x

PurpleNails profile image
PurpleNails in reply to Bubba28

Low thyroid levels can cause headaches, propranolol is often prescribed as migraine preventer. I find as I’m on a low dose of I don’t take at my regular time I start to notice.

I am interested to read you are post RAI thyroid ablation … I am too after diagnosis of Graves and 18 months of carbimazole and I have to say although I am now so hot at nights it quite unbearable. The ablation was in 2017.. I do also take Levo .. I’m just wondering if you too suffer being body hot 🥵 I’m wondering if it is normal.. thanks so much if you can answer this.

NIKEGIRL profile image
NIKEGIRL in reply to Graves1234

Politely i would ask how old are you. My Graves’ disease is well treated (I’m being polite) but was still hot. I am 48. I am now in peri mono pause and that is the reason I was still feeling hot. Worth considering if nothing else

Graves1234 profile image
Graves1234 in reply to NIKEGIRL

Hi

I don’t mind you asking I’m 61 in October finished menopause around 53 so I don’t put it down to meno but equally yes it could be hormone related … I just thought I was going hyper again so reduced levo to 100mcg a day but it didn’t help so back on 100 alternate 125 ..

NIKEGIRL profile image
NIKEGIRL in reply to Graves1234

Ok. Good to know u r 61 and have ticked the menopause box.

Hi. I have overt Graves. Flash name for obvious Graves. My levels are high T4 and T3. I have also been diagnosed recently in peri menopause. If your Graves is medicated correctly and u r low in ranges but still hot then you potentially should consider peri menopause. I am 48.

I finally got a copy of the last bloods although Consultant was reluctant to give them and said they were normal but I don’t think they are. I did get the T3 wrong in original post but it was a quick glance at the GPs computer screen so I obviously saw it wrong!

TSH 0.99 which is a big jump as it was 0.02 last time (0.35 to 3.50)

T3 3.7 (3.8 to 6.0)

T4 9.7 (7.5 to 21.1)

I really feel I am going the other way towards underactive now.

My very first bloods were

TSH <0.01 (0.35 to 3.5)

T3 6.3 (3.8 to 6.0)

T4 14.2 (7.5 to 21.1)

A week later

TSH <0.01

T3 5.8 (3.8 to 6.0)

T4 13.7 (7.5 to 21.1)

Based on these results I was put on 5 mg of Carbimazole.

Puzzled by it all! More bloods next week.

PurpleNails profile image
PurpleNails in reply to Bubba28

Your FT3 at diagnosis was fractionally over range. The carbimazole was given because of the low TSH. It has now caused your FT3 under range & FT4 low in range.

Did the doctor reduce? You are now taking every other day?

Dr hasn’t but I have started to take every other day as I feel I need to take responsibility for my health as I feel I will go very hypo if I continue the meds. It took about 6 weeks to go from <0.01 to 0.02 TSH but since then it has risen quite rapidly

PurpleNails profile image
PurpleNails in reply to Bubba28

The doctor must have missed how low your levels low are and was looking at TSH. It’s clearly due a reduction.

If your levels rises it’s likely the TSH will crash back down again. Be prepared for the doctor to challenge you on your compliance & depending on the sort of doctor they are may take a dim view if you haven’t discussed before hand.

Bubba28 profile image
Bubba28 in reply to PurpleNails

I have emailed to address my concerns. Hopefully he will reassure me or at least explain his reasoning. It is obvious to me I will end up hypo if I continue the same dose and that is just replacing one problem with another. I have been feeling rubbish and can’t keep feeling so rough

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