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in reply to: History of GD – Low TSH 5 months postpartum #1071414

Hi there,

Firstly congratulations on the new arrival. Ok here goes. My youngest is 5 months and I had a post partum flare up which resulted in a thyroid storm. I knew (like you ) after the baby that my thyroid had kicked off and started to feel very ill. At my 6 week check up my GP noticed the sweat was dripping off me and checked my bloods. They were going off , however, over in the UK the protocol is usually to allow it to run overactive for a while to see if it then either goes into remission or comes back into range. She checked my bloods 2 weeks later and was calling everywhere to speak to me. My levels had basically went into space. Over the course of that week I really felt as though I was getting worse, excessive swea,ts tachycardia, chronic fatigue, a horrendous tremor which looked almost parkinsonian and felt as though I was going to collapse. Well I did and became critically unwell.

Thats not to say that it happens to everyone post partum however, it may be worthwhile calling your GP or endo and asking for some advice or further bloods to be done. I felt reassured after the TS when my endo told me not to worry too much about the racing pulse as my heart was working much harder throughout the pregnancy….

I can completely sympathise with you as I was and still am (like you) desperate to get well for my kids. My endo and gyn had liased and they both agreed that my continous bleeding (for 11 weeks) post partum was most likely thyroid related.

I was like you really emotional – especially after the TS and I can honestly say that this forum was my life line and it was the people on here who really helped me through it. I felt suicidal and as though I was ready to snap. If I can get through so can you – just hang in there and as I have said before on here let us carry you through the bad days and rejoice in your good days.

HTH

M xxx

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in reply to: confusing? recently diagnosed..anyone?? #1071387

Hi welcome.

Ok this is going to be a long post I suspect – brace yourself. Firstly, I am going for surgery and I have been on thyroxine before and wasn’t told of any dangers just to look out for the ATD and yes I have had the low WBC etc….

Most importantly if you were asking my advice I would say wait until your levels are sorted before trying to conceive. I don’t really want to tell you this as I don’t want you to worry but I had 2 miscarriages and was attending a specialised endo/gyn clinic. I was told that the risk of m/c is 3 in 4 for GD thyroid patients. ” title=”Sad” /> I lost my 2 babies within 6 months ” title=”Sad” /> . I then decided that I wasn’t going to try again for at least a year as I was so traumatised and it wasn’t fair on my little boy (who is now 4). Well I fell pregnant 2 months later – complete shock , however I was carefully monitored and now have a healthy little boy. My endo asked me prior to falling pregnant if I wanted to gamble and come off all meds as I had been on them for 2 years without a break – the next month I was pregnant and I stayed off all meds throughout my pregnancy.

With the first baby I lost I was changed onto a low dose of PTU and the same with the second. To be honest though I have to believe that my little ones weren’t meant for this world and although hard to accept – it was God’s will.

With my last little boy it was a very long pregnancy for me with lots of careful monitoring and I would go through it all again without a complaint – however, if I was advising someone I would say try and wait until they say everything is looking ok. However, again I also believe that if they are meant to be here then they will. Over in the UK you attend a pre-pregnancy clinic and then early pregnancy clinic.

With regard to treatment I would give the meds a go, however having been hyper and hypo myself (and many others may have different tale to tell) I would rather be hypo and take the thyroxine than be hyper and therefore am having surgery after my current post partum flare up.

I hope that is of some help and if you want to PM me please feel free to do so..

M xxx

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in reply to: a word of caution before taking over the counter meds. #1071471

Hi Sarah,

Welcome – you have come to right place they are a great bunch ” title=”Very Happy” />

It is very daunting to just be diagnosed – we have all been there and its no easy task. I miss my old self too. I was so active and energetic and now well lets just not say too much ” title=”Very Happy” /> ” title=”Very Happy” />

Don’t be afraid to post as I have found that there is always someone on here who has the answer or been in a similar situation.
In the meantime take care and be gentle with yourself.

M x

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in reply to: Graves or Hypo? #1071466

Hey mamabear,

Genetics is a strange thing eh? Both me and my sis have GD but neither parent has it and there is no sign of it in the rest of my siblings (there are 6 of us).

My mum was diagnosed ( after 20 years of iron injections) with heamatomachrosis (a life threatening iron storage condition) , it turned out she had 2 faulty genes from both parents so we were all made to be screened by a genetic test. I turned out only one of my sisters has it and get this – she has 2 faulty genes also so my dad had to be screened and he has it (although it hasn’t kicked off yet "" :” title=”Question” /> :” title=”Question” /> ).

My youngest was tested on day 5 after birth for anitbodies but he was fine but they said that it doesn’t cancel out GD.

I wonder sometimes if we should all have genetic screening for these conditions or would we then be living our lives waiting for a condition to kick off :” title=”Question” /> :” title=”Question” />

I don’t know about the grey hair issue though but there could possibly be a link?

M x

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in reply to: Cardiac CT #1071480

HI Cathy,

Yes you are right – cholesterol is genetic. My mum was diagnosed around 10 years ago when she was in her early fifties by a routine blood check. They diagnosed it was genetic as she was and is a very healthy eater (vegetarian) and walks alot. Hers was very high so they put her on a strict diet to see if it would help – it took a year for it to come down, but she just gets it checked regularly. One of the main offenders for high cholesterol is prawns so she tends to avoid them etc…

try not to worry too much

m x

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in reply to: Will it end? #1071588

Hi Emily,

As said before you and I are very alike. I know many of my friends who are very fit and healthy and they are not involved nor intend to have the same involvement for their families as I do. Therefore, they can’t see why I get so frightened or frustrated about my lack energy to do what I want to do.. I hate the fact that when my eldest (only ready to turn 4 – still a baby really) looks me in the eyes and ask me to do something with him – I just think oh no don’t ask me to do anything I really just want to sit. I was so involved with him when he was younger and at baby classes 5 times a week and spent so much time in the garden with teaching him to plant tomatoes etc and now if you asked me to do any of that I would just crumble in a heap.

Every night that I go to bed I think "I’ll be a better mum tomorrow" my hubby gets so frustrated at me as he will say – its not you being a bad mum its about you being a sick mum. I have had to try and lighten up on myself and think yeah I am a good mum but it doesn’t take away the guilt that I reply to my son’s requests with "mummy is tired". Before this post partum flare up – around 2 years ago at least I could still take him swimming and do somethings with him – now I can barely breath with exhaustion some days and the anxiety and panic attacks which are hitting me at the moment are preventing me from going out.

You know what though- I have a very wise mum who had a terrible menopause and breakdown over nearly a 10 year period -she want from being supermum to being unable to go for the groceries or out and about – I am the youngest of a big family and she said that she always felt guilty because she couldn’t go out and about with me the same way she did my siblings. I remember at 10 years old my mum stopping outside a shop in the car as ran in to pick my own party dress etc… However, for all I remember that what I remember most was my mum always cuddling me and telling me how mush she loved me. I cling on to that thought that as long as the boys feel secure are kept clean etc then one day (please God) I will get over this and become more actively involved.

At the moment its good days and bad – the good days mean I am not sitting at the dining table with my head in my hands and using all my energy to create a pretend "everything is alright" atmosphere for my kids.

My eldest brought down a floor jigsaw this morning and I nearly collapsed with the anxiety as my mind could just not figure out which part went with what. I had to stay calm and float myself through it and think I will get through this and feel well again one day.

Hang in there Emily – even if like me its by a thread one day – just remember I am where God wants me to be.

M xxxx

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in reply to: And so it begins… #1071544

oh mamabear you are so funny! Where you perhaps in your hyper stage when you said that to him? I can just imagine his face when you asked him if he was going on a date!!! Yes I love the sarcasm – I think its to do with the Scottish sense of humour! My endo said that he often gets people (all women) pull him across the desk with his tie and curse and swear at him. He said he even had a death threat! ” title=”Very Happy” /> He is very good natured – he is someone I would get on well with socially. He said he just takes it in his stride and says "ok some blood work needing done I think and perhaps an increase in the meds may help!!!" ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” /> ” title=”Very Happy” />

I was always very quite natured before this condition. We had an acting manager who was making all our lives a misery. She became obsessed by food (mainly nuts and berries) and would go on at the staff saying we were all food hoovers. We were all getting fed up. Well mrs thyroid was present one day at lunch time and when she started to go on I could feel the annoyance and aggiatation setting in so I blurted out " You know what you need Eileen?" she said "no" I said " a fish supper" ( which is fish and chips deep fried over here). Her jaw dropped as well as the rest of the staff as it was so out of character. But oh I got a kick as I stood up calmly and left the lunch table!

Oh the joys

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in reply to: How can I be more supportive? #1074360

Hi there,

Just wanted to add that my sis had 3/4 of her glad removed around 9 years ago and she has had re-growth ( a large gotier yet again), her endo said though that it is very unlikely they will offer surgery again due to risks of going in at an old wound site. . I gather you are in the states? In the uk they don’t offer partial removals any more but only full thyroidectomy due to re-growth or other issues.

I would ask your daughters surgeon why they are only offering a partial removal as I would have thought that the US would have similar research as the UK.

Hope she is feeling better.
M xx

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in reply to: board going wonky???? #1071567

mammabear you are forgiven

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in reply to: board going wonky???? #1071565

ski could me over here in bonny freezing scotland thats sending wonky vibes!

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in reply to: Will it end? #1071580

Jake George my hubby is an editor if you don’t mind me asking what are your books that you wrote?

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in reply to: Daughter Just Diagnosed #1071901

"My advice would be to have your daughter see a therapist that is familiar with Grave’s Disease. I once read (it was probably on this site) that if you go to see a psychiatrict because you think your crazy, the first thing they check is your thyroid, because it mimics mental heath disease."

I would have to agree strongly with this. My endo actually told me that his secretary (who was a hardy woman) got signed of by her GP as having a complete mental breakdown. He called her at home and said nope don’t accept that diagnosis just yet come in and get your bloods done- he was right!

After my TS as many of you know I really thought I was going off my head my health visitor (as just after a baby) was trying to put it down to PND and I knew it wasn’t. My endo agreed that yes I was going off my flipping head. I know posted this before too but he also told me that my levels were so crazy that if I had committed murder I would have gotten away with it.

Many people don’t know the effect this condition has on your mental health. I am having such bad panic attacks at the moment and can barely get out the house.

From past experience it does start to settle though once the meds kick in. ” title=”Wink” />

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in reply to: very enlarged thyroid(grave’s)-surgery? RAI, tapazole, PTU? #1071573

Hello hello dolly ” title=”Very Happy” />

I just wrote you a post and it went awol!!!! Something strange happening on here tonight.

Firstly, welcome. Goiters are very common with this condition. I had a goiter 4 years ago and it disappeared after 4 months on meds. This time however, I have a large goiter and it seems to be growing. I presume you have been seen by and endo and he had a feel at your neck? This time with my goiter, like you it is really pushing on my trachea. When I told me endo he plapated my thyroid and noticed it was very enlarged and then had me do this:

Sit up on chair and lift both my arms straight up towards the ceiling. I could feel my thyroid pushing on my trachea and as though someone was choking me. However, he said that as long as he couldn’t hear a rattling sound as though I was struggling to breath then it was ok.

The swelling should go down once the meds start to do their job – sometimes it takes longer than expected. Mine isn’t reducing at all but it coming out soon ” title=”Wink” />

I would recommend if you haven’t been seen by an endo then get an appointment and make sure he has a feel at your neck.

Hope that offers some reassurance to you

M x

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in reply to: Will it end? #1071578

You are allowed a bad day – you sound so similar to myself….we don’t allow ourselves to be human most of the time.

Hang in there – tears can be a good thing too you know – it means your not bottling it all up!

I am going over to night prayers Emily and tonight I will be mentioning your name in my prayers that you start to feel better soon.
m xxx

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in reply to: thyroid thumping? #1071602

Emily I had pain and pulsating at my thyroid a few weeks back and posted on here…its a horrible feeling however, when I asked my endo about it he wasn’t concerned. I know Dianne had advised me to speak with someone because of the pain side of it. Its always worth the asking.

M x

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