[hyperm July 8, 2012 at 4:54 am Post count: 435]

#1059186

Hi all,

Liking the new webpage etc…

Is anyone still struggling with GD after a total thyroidectomy? I am 3.5 years on from my surgery and I have yet to become stable in my TFTs. The episodes where I feel ‘nomal’, have energy and think I am finally recovering are infact a transition into hyper of the extreme level T4 levels in the 60s where my endo’s eyebrows raise of his face and the cycle continues of thyroxine reduction to increasing the dose until i am back on a dose of 250-300 and then back again.

I really don’t want to come on ‘whinging’ but I honestly wonder is there any end to this? Is death the only ultimate cure for me? I often wonder how can someone possibly only have ‘thyroid problems’ and feel so ill? I was diagnosed with Gilbert’s Syndrome a year ago but they say there is nothing they can do as it is basically a condition which is ‘just there’.

I keep going with my small children, remaining active for them in order that they don’t miss out due to a constantly unwell mum. It leaves me nauseated, sweating, shaking and feeling like that I may not make it through the night with exhaustion.

What in earth is wrong with me that it won’t stabilise? Will this have an impact on my organs long term?

I am sorry to lower the tone to one of impending doom…. I just don’t know how much longer I can keep going with this. Today I geuinuely feel I have reached the end of the line, I will need to quit my work and in the process change our family circumstances dramatically….

M x

[catstuart7 July 8, 2012 at 5:27 pm Post count: 225]

#1172792

Hi Hyperm, HUGS to you. Some days I feel I can’t take it anymore and I’m just at the beginning. Give yourself credit for your strength going through so much. I’ve done a lot of reading so these are just a few ideas off the top of my head. Have you had your thyroid checked with ultrasound to make sure none of it has regenerated? and to verify that your total thyroidectomy was really “total”? These things do happen and I would wonder given what’s happening with your levels. Other thought, a second opinion is never a bad idea. How long have you been with the same endocrinologist? It may be someone new might have a fresh perspective and what is happening for you. Wishing you well!

[KimberlyOnline Facilitator July 9, 2012 at 9:55 am Post count: 4294]

#1172793

Hello – Nice to “see” you again, but sorry that you are still feeling poorly.

We’re not doctors here, just fellow patients, but here are a few thoughts.

As catstuart7 mentioned, a second opinion might be helpful if you’ve been struggling for so long. As I recall, you are in the UK, so I don’t know how feasible that is, but a fresh perspective might be just what you need to get you back on the path to good health.

It’s important to make sure that you are being consistent with taking the meds and with following the time restrictions regarding food and supplements to ensure maximum absorption. The general rule is to take the pills first thing in the a.m. and then wait 30 minutes (60 minutes is better) to have breakfast. Also, calcium/iron supplements and any soy products should be taken 4 hours apart from Synthroid, to make sure the replacement hormone is absorbed properly.

I don’t know if you have tried alternating doses every other day, but some patients find that their “sweet spot” of medication is somewhere in between the commercially available doses. Also, keep in mind that it takes several weeks to know if a particular dose is right for you, so making changes too soon can also make it more difficult to stabilize.

Another issue you might discuss with your doc is that there is also a new drug on the market called Tirosint that is the same active ingredient as Synthroid, but it comes in liquid form. (I’m not sure if it’s available internationally yet). The *theory* is that absorption should be more consistent with a liquid tab. However, this is so new that I haven’t spoken to any patients who have tried this…and our medical team hasn’t weighed in on this product.

Finally, a study came out a while ago suggesting that some patients might do better by taking their replacement hormone at night, rather than in the morning. The idea is that because metabolism slows down at night, more of the drug is actually absorbed into the system.

PLEASE hang in there — and stop by if you need help, support, or just a place to vent! You can also e-mail the Foundation directly at info@gdatf.org.

Take care…and keep us posted.

[Carito71 July 9, 2012 at 11:56 am Post count: 333]

#1172794

Hello M x,

I’m so new on my experience with GD that I don’t know how much of help I can be but I hope with all my heart that very soon you start to feel a positive permanent change.

As for a second opinion, I think it might we worth it.

Feel better soon,
Caro

[hyperm July 9, 2012 at 3:42 pm Post count: 435]

#1172795

Hi Carito and CatStuart;)

hi Kimberly how are you? Are you keeping better?

Thanks for the replies. The endo I am with is the best- he saved my life with the thyroid storm and I do trust his judgement. I do take my meds a good hour or so prior to breakfast and also I avoid any high iron foods for sometime after ( thanks to the advice on here many moons ago). I do genuinely feel at a loss some days…like most people I suppose.

I had started running (go me!) in training for a 10k. I was so pleased and thought I was giving GD a huge kick…I had got up to 6k when I had FBC and TFT’s done and was told to stop exercising with immediate affect. I guess GD knew I was trying to eradicate it from my body and got one over on me.

I still have double vision and attended an opthomolgist for sometime but I found it to be of little use. I tell you though…sunglasses required when the sun is out! Ouch!

I had my TFTs taken today so no doubt I will be reducing my dose by Friday. My sister had regrowth of her thyroid, although she had 3/4 removed (15 years ago when that was common proceedure, now they remove the full gland).

I have been living with this condition now for 7 years and I can honestly say that anything that can happen practically has. Most days I fight through the fatigue, it’s part and parcel of being a mother to small children I suppose. I guess that I will have really down days. I suppose like a lot on this forum, the disease has altered my appearance to an extent I don’t recognise myself someways and I feel it has ‘aged’ me. These things are superficial I know but some days it all seems too much.

Has anyone else got Gilbert’s Syndrome?

It really comes back to accepting, something Carlito you will learn to do with this condition. Realistically, looking at most posts on here, is there really a chance of remission? I don’t think so.

I suppose it’s just the roller coaster of GD.

Thanks again friends.

HyperM x

[Carito71 July 9, 2012 at 5:22 pm Post count: 333]

#1172796

M x,

You are right … we have to accept our disease in order to move on with treatment. It is very hard though. One goes through all the stages of loss. I think it is easier to accept when we are feeling more like ourselves.

I don’t have Gilbert’s Syndrome but I have Celiac Disease. It is hard coping with that too but I have learned how to live with it. Now I got to learn how to live with GD. I just hope that all these frustrating experiences make me a better person.

Congratulations on your marathon training. Maybe you can get back to it when you are feeling better?

You know, I’ve noticed that exercise makes me feel sick. I’ve just now been diagnosed with this problem but all my life when I have tried to start keeping an exercise routine, I start to feel sick. I hadn’t thought about it but I started exercising again in May and I got sick with hyperthyroidism early June. Anyway …. probably not related. As for now, I’ve been told not to exercise until my #s are leveled.

Hope you feel better soon.

Caro

[catstuart7 July 9, 2012 at 5:48 pm Post count: 225]

#1172797

Hi Hyperm, that is amazing you were training for a marathon, even if you had to stop still sounds like you got pretty far. Often I hear the mods here make the point that people post who have problems and once they feel better they go away. So please don’t judge your chance for health by reading posts. All those people in remission are busy living their lives and not posting on the net!

[Carito71 July 10, 2012 at 10:04 am Post count: 333]

#1172798

catstuart7 … Hello. It most be hard coming back to the forum and read if you have gone through the same experience and are doing a lot better. I would think that it would make one scared of getting sick again. It would be nice though if they would come back and would share their good experiences. It would be nice to know what worked for them. What changes they made and how they coped. It would help all of us who are still struggling at least have hope for the future.

“Of all the forces that make a better world, none is so powerful as hope. With hope, one can think, one can work, one can dream. If you have hope, you have everything.” ~ unknown.

[KimberlyOnline Facilitator July 10, 2012 at 10:40 am Post count: 4294]

#1172799

@hyperm – Wow, getting up to 6K is great. Hopefully, you will get your energy back to start working up to that again!

I’m still taking methimazole…getting close to 5 years now, but I’m still not ready to make a permanent decision.

I’m not familiar with Gilbert’s syndrome, but here is some info from the Mayo Clinic:

(Note on links: if you click directly on the following links, you will need to use your browser’s “back” button to return to the boards after viewing, or you will have to log back in to the forum. As an alternative, you can right-click the link and open it in a new tab or new window).

http://www.mayoclinic.com/health/gilberts-syndrome/DS00743

Take care — and please keep us posted!

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