Pro - Does anyone else's nest boxes get soaked in rain?

[Minnie&Moose]

You're such a friendly lot I thought I'd see whether anyone has had experience of a complete thyroidectomy? I'm due to have my thyroid removed in just over a week and am suddenly getting cold feet about the whole thing. It's not the procedure I'm bothered about; it's the life afterwards and being dependent on someone else's assessment of what's the right level of hormone replacement for me. I've had an overactive thyroid for 5 long years and have had periods of both under and over medication - but the underactive state, ie low hormone levels, has always felt worse to me than the overactive one (I prefer the "hyperactive chicken state" to the "slug on valium state" - at least with the former I feel alive!

 

Any words of wisdom out there please? I don't feel I can subject my family to yet more havering - they've had to live with me all this time

[Woodcat]

My Grandmother had one about 20 years ago. She had to have it as her thyroid was somehow growing round her windpipe. My aunt also has a thyroid problem and looking at the pair of them my aunt has times of over medication and under and to be honest seems to bounce like a yo-yo. However my grandmother is totally stable. The only time there was the slightest hiccup was when they changed her tablets from 100's to 25's and she didn't realize and was taking quarter doses. They may take awhile to get it right but once they do it appears to be brilliant. Good luck

[Egluntyne]

An overactive thyroid can lead to further problems, such as a fast irregular heart beat and visual problems, so that is worth taking into consideration when you make your decision.

 

Good luck.

[Christian]

Not quite the same, but OH has had 2 brain tumours removed in the past 3 years. The tumours were on his pituitary gland which controls all your hormones. They couldn't remove the whole pituitary gland, but most of it. He is on cortisone which is your stress hormone. He has no natural stress as in, not enough to stay awake at times, so is dependent on the tablets 3 times a day. It is a case of getting used to taking the meds (he is lucky, he gets really hot if he forgets - which he often does ) and making sure your have a good relationship with your endo Doctor.

 

The levels are tested often, but it will take a while to suss out exactly what levels are right for you. Persevere with it and keep going back until you feel human again.

 

Good luck.

[Ms Tilytinkle]

Hi there,

Bless you, my friend had one about 7 years ago, our girls went to school together & she came for Reflexology during her recovery. She is absolutely brill - looks fantastic & is always busy. She has no choice - it had to be removed it was so huge it was restricting her swallowing.

 

Good Luck, as Christian says .. it can take a while to feel human again with the Endocrine/TSH levels etc but well worth it long term. Also maintaining daily exercise helps, my friend plays hockey & I'm sure because she was so fit it helped her speedy recovery

 

MsTilysurroundsyouinwarmthofprayersandthoughtsofwellbeing.

[chickencam]

I have an underactive thyroid, so therefore take levothyroxine 100mcg daily. I don't know how they start the medication if the thyroid has been removed, but with me I started on 25mcg and gradually built up with blood tests every 6 weeks. I know what you mean about being under medicated I feel sluggish, but they seem to have got mine just right at the moment and I feel better than I have for years.

 

Good luck with the operation, it might be worth asking if there is a support group of people who have been through this, or anyone that they can put you in touch with.

[Olly]

A friend had one, and she seems to have been fine - I know what you mean about the medication, I have hypothyroidism and the under-medicated phases are awful, I've just had mine doubled and I feel so much better for it.

I presume they wouldn't be recommending removal if you didn't need it?

 

I would say you have the advantage because you already know the symptoms of under-activity, and will be alert to any change in your condition; it's a case of persevering till they get the right level. Best wishes for the op.

[meezers]

I had an overactive thyroid which they tried , unsuccessfully to treat with medication. In the end they operated, but removed too much and I now have an underactive thyroid I now take thyroxine every day. I agree, it was a miserable time while they tried to get my dosage right - not helped by the fact it took them a few months to realise it had gone underactive. Since I started the thyroxine ( 23 yrs ago ) I've been fine. Best part is my weight is stable - hasn't changed by more than 6lbs in all those years I have an annual blood test to check my levels are ok, they've upped the dosage over the years - usually arounbd pregnancy, but even then I felt fine.

[Omletina Kyckling]

My friend had this procedure a couple of months ago. She had been really quite ill for a time and when they took it out, they said it was in two sections the size of two packs of butter and still growing.

She wasn't great for a month or so after the op, but looks and feels fabulous now, and is glad she went through with it.

She was like you and was in doubt as to whether to go on the day even, but as I took her into hospital and waited with her, she had little choice.

All the best with it, sending you hugs x

[debbier]

My sister had hers out around 30 years ago. Back then, they erred on the side of caution to take out too much as it's easier to top up with thyroxine than administer the drugs necessary to suppress over-activity. She's very much used to monitoring her own levels (I guess you would be after that much time!), so knows when she needs a change of dose/blood test before her doctors do.

It's not the sort of op they would suggest if they didn't think it was necessary, but I'd seek some reassurance from your GP/consultant if you have any concerns.

[Minnie&Moose]

Many many thanks everyone for your very encouraging and supportive comments - definitely helps, particularly since I know I have no real option and need to go through with it. You're a very lovely lot - thanks again

[CatieB]

Hello I too am now dependant on daily thyroxine although for slightly different reasons I think the process of reaching stabilty is the same.

 

I can understand your reluctance to be reliable on medication, I dislike taking anything even paracetamol. Yes it can be a difficult process becoming stable and keeping it under review but you probably need to focus on the positive and the fact you need to do it and will get there. It has taken me ages, and been a difficult time so if you need any wise words, help or support please just ask.

 

5 years ago after pregnancy I had a long undiagnosed overactive thyroid so much so that when it was diagnosed my levels were dangerous. Unfortunately I was then allergic to both sets of medication so had to have emergency treatment. I chose radioactive iodine rather than a thyroidectomy- was that option open to you or ruled out? It was very quick and painless.

 

After the treatment I quickly went underactive and had to start thyroxine and it did take a very long time to stabilise me - proabably because the radioactive iodine continues to work.

 

I am now relatively closely monitored as two years after the procedure I developed thyroid eye disease. During that treatment I received wise words from a specialist in that I should keep to the same pharmacy as keeping to the same brand of drug helps consistency. My medication has now remained the same for about two years and the greatest difficulty now is remembering to take it- oh and the fact I still hate needles and blood tests

 

From what you've said it seems the right decision and your fears are probably just of the unknown. Goodluck

[Minnie&Moose]

Hi CatieB,

 

very sorry to hear about your thyroid eye disease - I also have it and that's the reason that I can't go down the RI route but have to have surgery. Very much hope your TED is manageable - I've found it harder to cope with than the actual thyroid condition.

 

Good tip about sticking to the same pharmacy - thanks, I'll remember that.

 

take care, Minnie&Moose

[CatieB]

WOW minnie&moose I have never met anyone with TED before and I totally agree... it is hard to cope with and as much as I know I should not be concerned with how I look and that its not important, its hard.

 

With TED its doubly important to have the op and get stabilised. As i understand it you need the stability for the TED to level out but then I don't understand it fully and I'm not sure they do... or if they do they didn't pass that understanding on to me. Thats one of the things I find hard to cope with.

 

My condition is now manageable - there is light at the end of the tunnel. How are you doing?

 

Best wishes with the op and I'm very sure you are doing the right thing Let me know how you get on.

[Minnie&Moose]

Hi CatieB - good to hear that your TED is now manageable & that you're sounding positive about it. After 4 years with it, and surgery, although I get frustrated with it, I manage - first thing in the morning the double vision is interesting - two headed chickens are quite a sight as are 2 headed cats and children and partners

 

As for appearance - I completely understand where you're coming from! I spent several years, prior to having an orbital decompression looking like 'Gollum' - it's not so bad now and is better disguised by the fact I have to wear dark glasses to cope with normal light levels. But that, combined with a period of very rapid hair loss when I was overmedicated, was definitely one of the lower points in this curious journey we both seem to be on! Fortunately the hair came back in pretty fast - but I did discuss the option of shaving it all off and having a henna tatoo up the back of my head

[CatieB]

Gosh isn't this forum an amazing place if only I'd found it some time ago and we'd connected earlier particularly during the worst times. I don't know if you had experience from other sufferers but I found the lack of info and inconsistant info a nightmare.

 

It is very interesting that the one thing you mention is the double vision in the morning. I did not have a good relationship with my eye specialist and found it hard to trust his jugdement. For example he raised his eyebrows when I told him how much worse my condition was in the morning and that I couldn't see when I woke up as I couldn't focus. He said he hadn't heard that. He initially told me it was my age (36 or 37 at the time) and only diagnosed me when the condition deteriorated rapidly a few weeks later.

 

I have in hindsight (no pun intended ) been very lucky and have not had to resort to surgery. I'm sending you the very best wishes and hope the op goes well.

[Minnie&Moose]

Hi CatieB - have pm'd you.

[Jules.]

I'm really glad that this thread is here, as its support for me, too.

First of all before I get onto my problems I'd like to say that I hope the op goes really well for you, M&M. A friend of mine had her thyroid out about 5 years ago, & she has no scar whatsoever, & although she does take thyroxine daily as far as I know she is keeping very well. She also got TED.

 

I was diagnosed with an underactive thyroid about 8 years ago. Then 2 years after that, when my youngest son turned 1 I started to get double vision. I'd been unable to wear contact lenses during my pregnancy, I just couldn't get them into my eyes, & looking back that was the start of my TED. I went to A&E as I was so concerned about the vision, & saw an endocrinologist who specialises in TED & Graves/Hashimotos disease, which I now have. I refused to take steroids as I was still breastfeeding at the time.

My eyes have, of course, settled now, so much so that last year I started to wear contacts again. I take 100mg thyroxine daily, & use eye drops & viscotears to keep my eye surface hydrated. My appearance has changed a little, but not to the point that it distresses me, & for that I am grateful.

 

I'm so grateful for modern medicine.

[Minnie&Moose]

Hi Jules,

 

Sorry to hear you ended up with TED but great that it's settled so well. I'm hoping that after the op mine will begin to settle - I should have shares in viscotears and lacrilube

[Jules.]

Hi Jules,

 

Sorry to hear you ended up with TED but great that it's settled so well. I'm hoping that after the op mine will begin to settle - I should have shares in viscotears and lacrilube

 

Ahh but the ( only!) good thing is that if you do need thyroxine you get al medicines prescribed free

[Minnie&Moose]

Ahh but the ( only!) good thing is that if you do need thyroxine you get al medicines prescribed free

 

Good point Jules - hadn't thought of that

[Minnie&Moose]

Many thanks to all of you for your good wishes. The thyroid op went fine. I came home the next day, spent a few days being a bit sleepy and useless, had the stitches out today, and have 10 days or so off work but now feel like a complete fraud! It's still early days re the thyroixine replacement levels - I'm currently cruising along on 125mg/day but I suspect that will be coming down shortly after my first blood test! However, I have homework to do - the surgeon is running an experimental trial to look at the impact of thyroid surgery on people's voices, since this is one of the possible risks of the procedure - so I now have lots of voice exercises to do that hopefully will help ensure I don't have too many voice problems. As a lecturer it's a vital part of my working life - particularly being able to bellow to the back of a 450 seater lecture theatre when the mikes have gone kaput yet again

[CatieB]

Really pleased to see your post and that it went well. I was thinking about you today. Fingers crossed that you keep level and that your voice is unaffected x

[Olly]

Glad to hear it went ok, and hope your voice recovers perfectly.