[Bobbi]

#1063533

If it is any consolation, REbecca, I had to fight an uphill battle myself to get properly diagnosed. I can totally sympathize.

As to why you are weak: while we are hyperthyroid, we lose muscle mass. Actual muscle wastes away. When we get back to CONTROLLED levels of normal thyroid hormone, over a period of months, the muscle starts to slowly return. I don’t know if we ever regain all of it — that may vary from one person to the next. But we can regain strength. SLOWLY. When my doctor had given me the OK to resume exercise once my hyperthyroidism was under control, I had an exercise physiologist help me to design an exercise program. He determined that my strength was 8% (yes, EIGHT percent) of what it should be for a normal woman my age! Obviously, going directly back to yoga, or whatever exercise I had been doing before the disease hit was going to take a long time. I began exercising with small paperback books as "weights."

Also, losing muscle means we cannot eat as much as we are used to, without gaining weight. Muscle loss lowers metabolism. When the muscle comes back metabolism rises again, but if we do not regain all the lost muscle it may never go back to what it was pre-disease. That means we have to adapt our calorie intake/exercise levels if we want to stay our old size.

We do get well again. It is a process though, not something instantaneous that happens just because we are in the "normal" zone for thyroid levels. I don’t believe any of us have a specific point within normal that is "our" normal. I have been treated for over 12 years now, and have been feeling quite good for most of that time. And the variou s blood tests that I’ve had have proven to me that I can feel good with a range of "normal" results. My endo and I try to tweak things so that I stay sort of mid-range, but TSH readings that are both lower and higher than that typically feel right to me as well. So, for the moment, try not to fret about what your normal might be. Just get to that normal range. Begin to exercise very slowly (baby steps) when your doctor says it is safe for you to exercise. Make sure that you are eating properly. And over time, you will begin to feel more normal as well.

[RebeccaJT]

#1018254

Hi folks

I am very relieved to have found you as it seems that thyroid treatment in the UK (particularly Graves) is still in the stone age! I’ve just printed off some of your publications it’s like someone turned on the light.

In brief – I think I have had GD issues for five years – I’ve been back and forth to the doctor and had my thyroid tested and told I was normal (they don’t test T3 as standard here). I then had gynae issues and was told I could have a hysterectomy (I was 36 at the time!). I said no! I knew something was wrong, but they wouldn’t listen. I then got swollen eyes last Nov and was told I had an infection. After 3 or 4 trips to the doctor I referred myself to privately to an eye surgeon who diagnosed hyperthyroid in May. He then forgot to refer me to an endocrinologist so I wasn’t seen until the end of July. I was then seen by a diabetes specialist (can you believe this??) who put me on ATDs (Carbimazole 30mg) and left me for 6 weeks so I went through the floor with hypo (but as my month old blood test said ‘normal’ – I was ‘neurotic’ and lacked ‘will power’ with food). I had gained a stone, was constipated, having very heavy periods (two or three a month) and could barely speak my brain fog was so bad. I was then put on the ‘standard maintenance dose’ of 10mg and left for another 2 months.

Fortunately, I have a habit of not doing what I’m told, and begged my GP to help me. With his help I sacked the previous endo, and referred myself privately to one of the leading GD endo’s in the UK at a major teaching hospital in London. I also complained about the old endo and got a 3 page letter of apology (not least for his secretary refusing to give me my retro blood results and screaming down the phone, ‘there is nothing wrong with you, your blood is normal!!!’ – not quite sure where she went to med school!!!). By the time I was seen by the new doctor I’d gone seriously hyper again, was shaking, sweating, heart pounding, had the beginnings of a goiter and had such bad T3 toxicosis I was incoherent.

I was put on 30mg for 5 days, then 20mg for 7 days and tested again. I was also given betablockers which I took for 2 weeks. New doctor says blood tests every two weeks are crucial in GD. These latest results said I was right in the middle of normal T3 and T4 (although personally think ‘normal’ is like a six lane freeway and my ‘normal’ might not be your ‘normal’.) However he’s refused to lower my dose until I’m tested again tomorrow – ie) two weeks later – as relapse prevention is more important than overtreating me. He wants to avoid RAI or block and replace because of my eye disease. To be fair, he seems like an excellent doctor. He’ s also referred me to the leading eye surgeon in the UK for my TED.

My problem is this – I have now gained two stone (28lbs) since July, I can’t exercise as I feel so week (I was doing one yoga class, two aerobics classes, two or three swims and walking 20 miles a week), I am self employed as a fundraising consultant and I can barely drag myself through the days at work and I have no sick pay cover. In the last 10 days my double vision is almost constant and I’m scared I’m going to lose my driving licence, and I’m so slow and lethargic and down that I can’t stop crying. I had to give up my religious studies course yesterday (I wanted to go back to Uni and do a theology Masters degree) and I went to bed last night and cried and cried and cried.

I joined a thyroid forum in the UK but that is mostly for hypo patients (hypo treatment in the UK is also appalling!) and I’m starting to feel angry when they talk about ‘feeling hyper’ when they are tweaking their meds as if they have ANY IDEA what GD is actually like. I’d love to be a ‘bit’ hyper!!!

I’m 38, single (again!), would like to have a family, and I have a busy career. I’m also in 12 step recovery for various issues and have been for a long time (8 years) and I’ve also had a lot of therapy for childhood trauma and abuse. I’ve worked extremely hard to put my life back together and slog through the emotional legacy of my past. It has been hell but I got there and finally got a glimpse of freedom. And now GD! I’m now beginning to think that the trauma of my past, all the therapy etc, triggered my GD. I feel like my life is slipping away again. I lay in the dark last night and thought, ‘what’s the point? No matter how hard I work, everything always go wrong’ – this dark, self-piteous thinking is not ‘me’!!

Does it get better? Will I get back to my ‘old self’ – I’m usually a cheerful, active, outgoing, hardworking, energetic person – I’m young, trying to run a business, and did have a full life, and it feels that here in the UK I’m seen to be making a big fuss about nothing – just take your pills, go away and be a good girl.

Does anyone identify? can you help?

Thanks very much for listening

Best wishes

Rebecca
x

[RebeccaJT]

#1063534

Hi Bobbi

Thanks very much for taking the time to write back. It’s just good to know its not just me. No one’s really said anything re exercise at all and I’ve been told that diet is ‘mind over matter’ and that if I’m gaining weight its because I lack ‘self control’ – well that was the last endo at least, have not yet got to this subject with the new one as I was so hyper when I saw him I think the immediate priority was to get me off the ceiling. I’m eating about 1,500 calories a day of highly nutritious food – so small portions of good quality protein, legumes, grains and I’m seeing a medical nutritionist who has me on something called ‘The Holford Diet’ which is based on ‘optimum nutrition’. So I have quarter of a plate of protein (if that), quarter of complex carbs (quinoa, brown wild rice, sweet potato etc) and half a plate of salad or veg. I’m eating lots of berries (low sugar) and low fat live yoghurt too. I’m taking zinc, magnesium, B vits, Calcium with D, vit C, Omega 369, and something called Korolex to treat candida. I’m off wheat and sugar, trying not to drink caffeine and I have cut down smoking (this last I realise I have to give up asap if I want to help my TED but I’ve been feeling so awful, I did try, but just couldn’t handle the double whammy of withdrawal and GD!).

I’m feeling a lot better today – I was very tearful all day Saturday and yesterday but I called up a friend of mine who had a bad car accident and damaged her back and she’s also on the slow road to health, its totally interupted her life, and we went for a coffee. I just needed to vent I think. Just to have you and her say ‘yes its hard’, ‘yes I understand’, ‘no you are not in control and its OK to feel upset’, ‘yes it will get better’ etc etc really was the tonic I needed.

I came home and did my Yin yoga DVD – very gentle, long held postures, no jumping around and I walked my dog (good autumn sunshine yesterday) and had a long soak in the bath and then watched a DVD (with one eye shut, in my shades!!!). Managed to meditate too – that helps.

As with everything in my life I think the answer is acceptance and surrender to WHAT IS, rather than trying to will it away or deny it. Bit of a process though!!! But done it before so sure I’ll get there.

Thanks again for your response.

Best wishes

Rebecca
x

[Ellen_B]

#1063535

Hello Rebecca,
I do not know the statistics for how many people regain lost muscle mass. I can tell you about the experience of one thyroid patient whom I used to work with very closely. She came down with Graves’ in her mid twenties right after she got married. She chose a thyroidectomy because she wanted to start a family right away. She was able to get regulated in about 6 months and very soon got pregnant. She had two children four years apart.
I did not meet her until after 20 years had gone by. By that time she certainly had regained her strength. In fact she had (and still has) more energy than anyone I ever knew. She worked very long hours and required less sleep than most. Every day before work she ran 5 miles.
Another positive note. Her severe eye problems cleared up after she got pregnant. One cannot count on that happening every time but is nice to hear good things happen to Graves’ patients.
The reason I am telling you all this is to let you know that is true that is possible with Graves’ to become less out going and less energetic—but only temporarily–and later to regain it all and more back again.
Ellen Brightly
Administrative Assistant
Graves’ Disease Foundation
Toll-free – (877) 643-3123
400 International Drive
Williamsville, NY 14221
Email: Gravesdiseasefd@gmail.com
Website: http://www.NGDF.org <http://www.ngdf.org/

[Ski]

#1063536

With careful attention, after achieving normal, stable thyroid hormone levels, your muscle strength and tone will *definitely* return. Seeing a physical therapist before you begin re-strengthening is a good idea, since you will not know exactly how much muscle you’ve lost or from where, without a comprehensive evaluation. I’ve heard stories of patients who had to return to an exercise regimen by "lifting" paperback books, it was all the muscles could initially tolerate. So, careful, but you’ll definitely get there!

[Author]

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