Hyperthyroid / Graves Disease feeling alone! - Thyroid UK

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Hyperthyroid / Graves Disease feeling alone!

irish31
irish31

Hi Everyone,

I have just come across this wonderful site full of information and relatable experiences. You can imagine my relief as I have been feeling very alone for the past few months with highs and lows. I struggled to understand my new diagnosis and find people who had experienced it ..most people said they were Hypo not Hyper.

I have recently had my first child who is just beautiful and healthy and everything is fine there. Our bond is strong and we both feel very loved but also independent when not together. He is going to be turning 1 years old next month and I cant believe how fast its gone. I have been diagnosed with Graves by a referral specialist last month who believes it is from pregnancy.

anyway im here to see if anyone can help me :

so my first signs were shaky hands heart palps and loosing weight - all was fine in my head just thought I was extra busy while on maternity :) it was when I missed 2 periods and started to feel exhausted I went and had a blood test.

my blood test came back at t4 - an outstandingly high of 123

t3 tsh and antibodies all high but the t4 was the highest did an ecg for my heart was fast but regular not beta blockers needed - put on 3 x 20 mcg of carbimzole then dropped to 2 x 20 mcgs a day. now have 50mcgs of levothyroxine to help me out as the Carbimizole esp that amount brought me down from a 123 t4 reading to a 9 reading. needless to say I feel like utter crap my body is so heavy and exhausted I can barely do normal chores never mind look after baby aswell. ive been on the meds since 29th of June and I cry everyday as im frustrated with my mind and body for letting me get in this state ! can anyone shed some light on this for me and will this feeling of exhaustion go soon? I also start a new job IN 7 DAYS baby is going to nursery and all this is full time am I going to cause more stress to myself ? should I stay at home ? I am a stress person when it comes to productivity so believe work is good to keep me occupied but my health is at risk or not ? I am happiest when in a routine and working - im one of those ppl lol :?

thanks sorry its long I am just trying to give you a picture of what I going through.

23 Replies
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SeasideSusie
SeasideSusieAdministrator

irish31

TSH was high??? For hyperthyroidism TSH would be very low with high FT4 and FT3.

Which antibodies were tested?

For Graves it should be TSI or TRab.

For Hashimoto's it's TPO and TG.

Why didn't your endo reduce your carb when your FT4 was at 9, rather than give you levo?

irish31
irish31
in reply to greygoose

She said because my antibodies are so high still. My t4 was 123 they shot me down to a level of 12 now 9 but have put me on Levo because I had such bad aches and pains. Started to struggle and have bad Aniexty so now they have me going to 75mcgs of Levo with 2 x 20 mcgs of carb still a day to try and relieve the physical bad symptoms I have felt it's like I came crashing down from such a high level it has been a shock to my body.

greygoose
greygoose
in reply to irish31

But which antibodies? That's what you need to know. I'm willing to bet they aren't Grave's antibodies. But, even if they were, taking carbi won't bring them down, it'll just make you hypo. You're very hypo now.

irish31
irish31
in reply to greygoose

I feel stupid because she just said your antibodies are high and I thought it was just the general term used. I didn't know there's different kinds my gp blood test before my referral specialist test says thyrotoxic on carb 210mg tag below range <0.03 mU/L (0.35-5.5)

T4 level 10.9 pmol/L (10.0- 19.8)

I will call the doctors in the morning and get them to send me all the tests so I can save interpretate them.

greygoose
greygoose
in reply to irish31

You cannot be thyrotoxic with a T4 level at the bottom of the range. Thyrotoxic means you have too much thyroid hormone - T4 (and T3 but they didn't test that!) - in your blood. 10.9 in a range of 10 - 19.8 is not too much thyroid hormone.

Please don't feel stupid. How are you supposed to know about antibodies if you haven't studied all this? Every autoimmune disease has its own antibodies and they all have names. For Hashimoto's thyroiditis, it's TPO and Tg antibodies. For Grave's it TRAB and TSI. The main problem is that some doctors don't know the difference between Hashi's and Grave's! We've had cases on here where the endo has been treating Hashi's as Grave's, which is why we always ask about the antibodies.

It's always a good idea to ask for a print-out of your results, so that you know exactly what was tested, and exactly what the results were. That way, you can take control of you own disease. :)

irish31
irish31
in reply to greygoose

My t4 was 123 high they brought it all the way down to 10.9 as made me take 3x 20 carbs daily. (Specialist dropped me to 2 x carbs said 3 was so harsh on me as I went crashing down in t4 level to 10.9 it states that I was thyrotoxic because t4 was discovered at 123 ?

greygoose
greygoose
in reply to irish31

Well, that would be thyrotoxic, yes. But you're not thyrotoxic anymore.

irish31
irish31
in reply to greygoose

Ahh ok I see well that helps me think a bit positive haha so I must be in hypo stage as I feel like crap and energy has been zapped. So they are giving me thyroxine slowly to bring me back up while still having me on carbs.sorry your very helpful thank you 😊

greygoose
greygoose
in reply to irish31

Well, yes. And, as Valerian says below, this is a well-known treatment for Grave's, called 'Block and Replace'. But, before I allowed myself to be messed around like that, I would want to know that I actually had Grave's.

irish31
irish31
in reply to greygoose

Maybe it was the TPO as not had any other tests other then 4 blood tests

greygoose
greygoose
in reply to irish31

Might be a good idea to ask, just to make sure. :)

irish31
irish31
in reply to greygoose

So it was the TPO and it states above high ref limit >1300iu/ml (0.0 - 60.0) on the 30/7/18

My TSI is 20.60 iu/L (>0.56) above high ref limit

Biochemistry suggests sever thyrotoxicosis.

The thyroid stimulating immunoglobulin are saying it's more like the antibodies associated with graves.

greygoose
greygoose
in reply to irish31

Interesting! They did do antibodies. And it sounds like you have both Hashi's and Grave's - which does happen but not too often. So, sounds like the Grave's is dominant.

However, they really should have explained to you what they were doing - or trying to do. Block and replace isn't easy to do. I think you're going to have to learn as much as you can about it - and about your own body and reactions - so that you can guide them. Because, left to themselves, they will allow you to be under-medicated with the replace, whilst over-medicated with the block, from what I've seen.

Hello Irish31

You don’t mention the reference ranges for your tests, but 124 is very high by any of the commonly used ranges. Your TSH level is likely to be <0001 ie barely perceptible).

Hyper conditions are less common, but there are quite a few of us here, at various stages in our treatment. When you’re posting, if you put something in the title to show that you are hyper (as you did this time), one of us is more likely to spot it if we’re just having a quick flick through.You’re definitely not alone !

The treatment option you’re on is called ‘Block and Replace’, and common for Graves’ ,

The antibody tests should help distinguish between Graves’Disease and post partum thyroiditis, another condition that can lead to high thyroid levels after having a baby. The initial treatment (especially with such a high FT4 level)would be the same, but with the PP thyroiditis, you could end up becoming hypO after a while, with your levels (potentially) returning to normal within 12 months. It would be difficult to assess your natural thyroid levels from the last test, because you were on a very high dose of Carbimazole. thyroid.org/thyroid-disease...

As for starting work, stress and Graves’ aren’t a good combination, but I can’t imagine that staying at home all the time within a small baby is completely stress free! Full time work might be a stretch right now, but part-time might even be helpful - hard to predict, and you won’t know until you try.

Just try to be sensible about what is realistic, and pace yourself so far as is possible. It really won’t be necessary to be running the whole company by day 2 ! A lot of us with active Graves’ find that we push ourselves until we drop, and are really bad at recognising this !

Thank you yes I understand it's such bad timing to happen as I put stress on myself to do a good job in everything I do. So when I was feeling hyper it was fine as I could handle anything now I feel very hypo and struggling with my self esteem I've also gained 9lbs rapidly and feel like I want to exercise but the aches and pains esp in my lower back are stopping me x

DoeStewart
DoeStewart
in reply to irish31

Hi - your story sounds like mine. I also became hyper after my first child, everyone thought I was on the best diet ever, eat twice as much as everyone else and lose half a stone a week. Only it's awful isn't it, couldn't carry a drink without spilling it as my hands were shaking so much. Palpations were terrible, so much energy I couldn't sit still. I was given all the meds to slow everything down but ended up with partial thyroidectomy - all this was 30 years ago. Getting your meds right is a real juggling act but lots of helpful advice on this forum. I hope your health picks up soon.

Question, did you have nodules too? So you were Graves positive and a partial removal worked for you aka no meds or did just a partial left develop and produce enough to be hyper again? Because here Dr's want all or nothing... no partials.. or nodule removal..

No nodules. Think they would have given me radiotherapy treatment but as I hadn't completed my family it was decided to do thyroidectomy. The surgeon saw me after the operation, said my thyroid gland had been in a terrible mess - whatever that means?. Anyway he had decided to leave me with an 1/8th in the belief that it would produce enough thyroxine by itself. How wrong he was. I was left unmedicated for 2 years and was very unwell. I have been fairly stable all these years with the odd glitch but I do have to constantly remind the Docs that I don't have a working thyroid so need to be looked at differently.

Don't recall how I found this site but here in the US so its interesting to see differences in treatments etc. Hope you all don't mind.

hyper with graves... well here they don't do block and replace just block... then attempt to get to the right dosage to get into the normal ranges via cycles of dosage wait then retest and adjust with goal to get you on the lowest dosage possible .. remain stable for 2 yrs when reached then back off completely .. Now where before they set a timeline on meds and must be off them by xyz.. to today if balanced and symptom resolve you can stay on super low dose. If cant maintain low dose then some Dr's push for RAI or total thyroid removal.. (where RAI for graves especially if been on a anti-thyroid can trigger or make worse the thyroid eye issues) Sadly many endocrinologists handle a lot of diabetics and low thyroid patients but not many have a lot of hyper thyroids/graves so often have to present them with latest studies, treatments etc.

Common prescription standard is methamizole.

Plus put on a gluten/dairy free diet. and given B-12 (monthly)and vitamin D, selenium, CQ-10.

Stress is a huge driver of symptoms... or what you and your body consider/react to as stress.. for example: some people love going over bridges and others totally stress out , some if having to give a presentation at work thrive on the attention yet others start sweating, feel nauseous almost a full blown panic and dread,,, basically their internal feeling on the situation is different and their bodies respond in kind..

Given your in the beginnings of treatment and have yet to feel somewhat stable in your symptoms, I would be cautious placing too much stress on yourself... would suggest going slow and easy as a new born, new medical issue not under control and new job in short order is a lot. Stress is not good and is counter to the situation and possibly constant stress and burning the candle at both ends helped the situation develop (I know it did for me) It is well known that stress can lead to disease but other physical issues and or make current issues worse. And you have a new wee one at home too so take care...

So new job, a stressful job only you know how your mind/body typically responds in that situation. If its the former . Perhaps from being "I'm a stress person" always revved up so to speak to a "I love and thrive on a challenge "Ommm" I feel great and at peace when I am contributing and productive" meaning avoiding stress/overwhelm type feelings.

Good Luck :)

Hi there

Awww so sweet of you to comment and give me all the advice I really appreciate it. I will get back and type a long reply to everyone its just well lol I am starting my new job in the morning and I also am studying my theory sailing modules for Fridays practical intensive sailing course. I think its too late for me to rethink all of these decisions and am going full force into them. I will however keep my health issue in check as best I can over the next few weeks and report my findings. Needless to say everyday throws adverse challenges on my body and mind and I am just coming to terms with this newly diagnosed disease. Plus I had a big swollen eye issue past week that has only now subsided - the joys :) wishing you all a great week ahead as best you can manage x fingers crossed!

Such great advice : )

When my Graves was at its worst I was completely and utterly exhausted but I was in my mid sixties anyway so I didn’t have the energy of youth. I slept a lot and my husband shopped and cooked. My standards of housework definitely plummeted.

Id say do the bare minimum in the house or even go as far as just do the things you enjoy and don’t bother about the rest. I kept going through the gym and doing Pilates. I modified everything I did but I felt I wanted to keep doing some of the things I enjoyed otherwise Graves would have ‘won’.

Could you afford for someone to come in and do some cleaning for you and take all the help you can get with the baby.

You could shop online etc that would save you time and energy.

I always kept a diary with the medicines and quantities I was taking as well as a quick note of how I was feeling, my blood test results - I’d say always get a print out of your blood test results with their ranges plus I’d note down any questions I had for my consultant and any interesting articles I came across from sites like this.

When I started on carbimazole my pharmacist told me to take high strength vitamin C which I did and I think that helped me feel good. Do you know that you want your vitamins B12 and D plus your ferritin and folate to be well up in their ranges to support your thyroid?

If your eyes feel awful get yourself some preservative free eye drops and put them on every few hours throughout the day and that will help things. I like HycoSan eye drops, Theolose Duo or just regukar Theolose.

Good luck with your treatment, try and do the things you want to do that make you ‘you’ but don’t be surprised if you find it hard. Graves really is a horrible condition and you will very likely need a lot of rest.

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