# Latest test results are good but still feeling tired :(



## karen18

Hi Everyone,

After being diagnosed with Graves Disease a little over 3-months ago and trying to balance my meds for the past 3-months I finally have normal thyroid function.

I have been taking 7.5mg of Carbimazole a day and here are my latest results below.

*Free T4 : 11.4 pmol/L (Ref Range. 10.0 - 19.0)
TSH 2.01 mIU/L (Ref Range. 0.50 - 4.0)*

So after getting these results back you think I would have been excited, but not the case. For the past 3 weeks I have been feeling terrible! I'm exhausted, I have dizzy spells on and off throughout the day, even when I'm laying down and that makes me feel nauseas. I am also very weak, moody and I have trembling hands on and off as well and I'm not sleeping well.

This made a lot of sense when I received my Glucose test results back because my levels were low. What I can't work out, is why 3 weeks on after receiving my tests back and eating lots of carbs and sugar to combat the low glucose, why I am still feeling the same - Terrible!

*Serum Glucose:

Random 3.2 mmol/L (Ref Range. 4.0 - 7.8)*

Any advice would help? At this point I have done a bit of reading and found that carbimazole can cause a dramatic drop in Glucose levels, however I'm not sure how true this is?

I just want to feel human again! I even dropped my meds back to 5 mg 2-days ago bc I'm thinking they're the culprit?

The other funny but strange thing. I stopped taking my meds a while back just before my latest blood results. I went to get out of bed one day and the room was spinning! I was so dizzy and nauseas that I couldn't even get out of bed without feeling like I was drunk. I thought it was the meds immediately. I stopped taking the Carbimazole as of then and went 3-days without it and I was feeling great! Well until the 3rd day. I slowly started getting an increased heart rate, tremors, of course I still had the dizzyness as well... so I started back on the crabimazole bc I panicked.

My doctor now informs me that all those symptoms may not have been my thyroid acting up again, it could have been bc my Glucose levels were so low.
Now I don't know what the issue is? Shoud I stop the carbimazole again and see what happens? So many variables.... and I'm so frustrated!


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## Andros

karen18 said:


> Hi Everyone,
> 
> After being diagnosed with Graves Disease a little over 3-months ago and trying to balance my meds for the past 3-months I finally have normal thyroid function.
> 
> I have been taking 7.5mg of Carbimazole a day and here are my latest results below.
> 
> *Free T4 : 11.4 pmol/L (Ref Range. 10.0 - 19.0)
> TSH 2.01 mIU/L (Ref Range. 0.50 - 4.0)*
> 
> So after getting these results back you think I would have been excited, but not the case. For the past 3 weeks I have been feeling terrible! I'm exhausted, I have dizzy spells on and off throughout the day, even when I'm laying down and that makes me feel nauseas. I am also very weak, moody and I have trembling hands on and off as well and I'm not sleeping well.
> 
> This made a lot of sense when I received my Glucose test results back because my levels were low. What I can't work out, is why 3 weeks on after receiving my tests back and eating lots of carbs and sugar to combat the low glucose, why I am still feeling the same - Terrible!
> 
> *Serum Glucose:
> 
> Random 3.2 mmol/L (Ref Range. 4.0 - 7.8)*
> 
> Any advice would help? At this point I have done a bit of reading and found that carbimazole can cause a dramatic drop in Glucose levels, however I'm not sure how true this is?
> 
> I just want to feel human again! I even dropped my meds back to 5 mg 2-days ago bc I'm thinking they're the culprit?
> 
> The other funny but strange thing. I stopped taking my meds a while back just before my latest blood results. I went to get out of bed one day and the room was spinning! I was so dizzy and nauseas that I couldn't even get out of bed without feeling like I was drunk. I thought it was the meds immediately. I stopped taking the Carbimazole as of then and went 3-days without it and I was feeling great! Well until the 3rd day. I slowly started getting an increased heart rate, tremors, of course I still had the dizzyness as well... so I started back on the crabimazole bc I panicked.
> 
> My doctor now informs me that all those symptoms may not have been my thyroid acting up again, it could have been bc my Glucose levels were so low.
> Now I don't know what the issue is? Shoud I stop the carbimazole again and see what happens? So many variables.... and I'm so frustrated!


Gosh, Karen.................I have no idea on how to advise you. I just wanted to let you know I read this and perhaps other posters have had similar experience and can make suggestions based on their own experiences.


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## Lovlkn

Karen18,



> Free T4 : 11.4 pmol/L (Ref Range. 10.0 - 19.0)
> TSH 2.01 mIU/L (Ref Range. 0.50 - 4.0)


Your Free T 4 says you are hypo - tell your doctor to reduce your medication as you are having all the symptoms of hypo.

Your doctor is treating you based on TSH and needs to pay closer attention to your symptoms and your bottom range FT-4.


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## karen18

Lovlkn said:


> Karen18,
> 
> Your Free T 4 says you are hypo - tell your doctor to reduce your medication as you are having all the symptoms of hypo.
> 
> Your doctor is treating you based on TSH and needs to pay closer attention to your symptoms and your bottom range FT-4.


I have arranged to see a new Endo on Tuesday so will take my latest results to him. I did drop back my meds to 5mg because I felt better one day when I was a bit late taking them.

I was also thinking my adrenal glands could be fatigued because I checked the symptoms of adrenal fatigue and I have every single one. My doctor won't test me because it's a bulk billing clinic and they don't want to pay for an expensive test. What is this world coming to, when your doctor won't even help you with your health? She told me that my Endo what be more authorised to request such a test.


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## karen18

Lovlkn said:


> Karen18,
> 
> Your Free T 4 says you are hypo - tell your doctor to reduce your medication as you are having all the symptoms of hypo.
> 
> Your doctor is treating you based on TSH and needs to pay closer attention to your symptoms and your bottom range FT-4.


Hi Lovlkn,

I have been to see my Endo now and he did reduce my medication. Now rather than taking 5mg every day, I have to take 5mg every second day.

Because I have had a Hyperthroidism on and off for the past 7-years and was only recently diagnosed with the Graves Disease in the last 3 months, he's concerned that even after he takes me off the carbimazole there's a high likelyhood that my symptoms will just come back again later down the track.

I only changed my dosage on Tuesday but I'm still feeling tired, weak and dizzy. Is this normal?

Also I'm not sure whether to have the RAI? I'm scared about not having a thyroid and how my moods a general health will be if I have the gland removed?


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## Lovlkn

karen18 said:


> Hi Lovlkn,
> 
> I have been to see my Endo now and he did reduce my medication. Now rather than taking 5mg every day, I have to take 5mg every second day.
> 
> Because I have had a Hyperthroidism on and off for the past 7-years and was only recently diagnosed with the Graves Disease in the last 3 months, he's concerned that even after he takes me off the carbimazole there's a high likelyhood that my symptoms will just come back again later down the track.
> 
> I only changed my dosage on Tuesday but I'm still feeling tired, weak and dizzy. Is this normal?
> 
> Also I'm not sure whether to have the RAI? I'm scared about not having a thyroid and how my moods a general health will be if I have the gland removed?


I think your symptoms are still lingering from being over medicated.

A better plan that taking anti thyroid meds every other day is to take 1/2 the amount every day because of their short shelf life.

With the small amount you are on and if our levels remain stable you can remain on an anti thyroid indefinitely if it keeps your levels in check. There is no need to go off if you still have the antibodies and as long as you can deal with how you feel you can keep your thyroid. Antibodies testing is key before you would stop any anti thyroid meds.

I stayed on anti thyroid meds for 4.5 years before giving up and having my thyroid removed. The positive about having surgery vs. RAI is you become hypo immediately and dosing replacement is much easier because there are no up's and downs like there can be with RAI.


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## Debbie from Milwaukee

Karen:
Lovlkn certainly has had the experience with anti-thyroid meds. Sounds like it may be worth it to run it by your endo if it would be OK to take 1/2 pill a day rather than 5 mg. every other day.

I am still wondering about your symptoms of feeling tired, weak, and dizzy. I know from my daughter's experience that there are some nutrient levels that turn up notoriously low when the thyroid is pitching its tantrums. Ferritin (which I believe is the protein that is involved in iron transport), B12, magnesium (which is best detected by running an RAB test rather than serum magnesium test), and D3 are all nutrients that any doc can test for and low levels would contribute to the symptoms you are feeling.

When it comes to testing adrenals, it gets tricky. There is significant controversy among docs whether "adrenal fatigue" actually exists, and testing of the adrenals is very difficult because of the fluctuating levels of cortisol and other adrenal hormones throughout the day. Nevertheless, I have heard from folks with a lot more experience with thyroid problems that when your thyroid is sick, the adrenals have to take over metabolic functions. I have heard that a saliva test is the most reliable, but you need a cooperating doc who will advise you where you can get one (and hopefully your insurance will reimburse you).

Perhaps if your symptoms persist you could be tested for some of those nutrients I listed above, and pursue looking at the adrenals if nothing turns up. Anyway, I do hope you begin feeling better soon. It must be hard to function while you feel so depleted!


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## karen18

Lovlkn said:


> I think your symptoms are still lingering from being over medicated.
> 
> A better plan that taking anti thyroid meds every other day is to take 1/2 the amount every day because of their short shelf life.
> 
> With the small amount you are on and if our levels remain stable you can remain on an anti thyroid indefinitely if it keeps your levels in check. There is no need to go off if you still have the antibodies and as long as you can deal with how you feel you can keep your thyroid. Antibodies testing is key before you would stop any anti thyroid meds.
> 
> I stayed on anti thyroid meds for 4.5 years before giving up and having my thyroid removed. The positive about having surgery vs. RAI is you become hypo immediately and dosing replacement is much easier because there are no up's and downs like there can be with RAI.


I might try what you said, bc Taking the meds one day on and one day off is giving me palpitations so I would rather have a regular dose daily 

I'll give it a go and let you know how I go.

As for the antithyroid drugs (carbimazole). People kep saying that you can't stay on them long term because they can damage your liver. Is this true or is this just one of those silly rumours circulating?

I really don't want to have RAI. Only because I had to throw in my job and if I have to go through another period of my levels going stupid all over again I don't think I could cope. If I could stay on the carbimazole for life I would be okay with that. Is there another option to carbimazole that isn't damaging to the liver / bones etc?


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## karen18

Debbie from Milwaukee said:


> Karen:
> Lovlkn certainly has had the experience with anti-thyroid meds. Sounds like it may be worth it to run it by your endo if it would be OK to take 1/2 pill a day rather than 5 mg. every other day.
> 
> I am still wondering about your symptoms of feeling tired, weak, and dizzy. I know from my daughter's experience that there are some nutrient levels that turn up notoriously low when the thyroid is pitching its tantrums. Ferritin (which I believe is the protein that is involved in iron transport), B12, magnesium (which is best detected by running an RAB test rather than serum magnesium test), and D3 are all nutrients that any doc can test for and low levels would contribute to the symptoms you are feeling.
> 
> When it comes to testing adrenals, it gets tricky. There is significant controversy among docs whether "adrenal fatigue" actually exists, and testing of the adrenals is very difficult because of the fluctuating levels of cortisol and other adrenal hormones throughout the day. Nevertheless, I have heard from folks with a lot more experience with thyroid problems that when your thyroid is sick, the adrenals have to take over metabolic functions. I have heard that a saliva test is the most reliable, but you need a cooperating doc who will advise you where you can get one (and hopefully your insurance will reimburse you).
> 
> Perhaps if your symptoms persist you could be tested for some of those nutrients I listed above, and pursue looking at the adrenals if nothing turns up. Anyway, I do hope you begin feeling better soon. It must be hard to function while you feel so depleted!


Hey Debbie,

I'm going to try the 2.5mg a day. At the moment taking 5mg one day and then having one day off is not really working for me bc I'm aggitated and I'm get palpitations.

As for the Adrenal test... You're so right. The all day Cortisol test - Saliva test and spitting into 4 test tubes 4-times throughout the course of the day is the most accurate. However my doctor won't do it bc it's a bulk billing clinic (Covered by Medicare / The Government) and they won't fund it. My Endo is happy to do the test but would only agree to the blood test which is taken at 9am in the morning after fasting. I guess he like my doctor is all about keeping the price down? It's frustrating and I can get it done myself, if I want to pay for it. I'm not working at the moment and funds are tight so I might just do this test and see how I go?

I am feeling a little better since lowering my meds and I'm not as exhausted. So maybe you and lovkln were right, it may have just been that my meds were to high. I'll get the Adrenal test done anyway, it can't hurt right? 

As for my levels, I guess the next few days will be a tell tail sign of whether my dose was just too high?

Thanks for your advice, and to lovkln too. You're both great with all the advice you give and I don't know what I would do without you both. xx


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## Lovlkn

karen18 said:


> I might try what you said, bc Taking the meds one day on and one day off is giving me palpitations so I would rather have a regular dose daily
> 
> I'll give it a go and let you know how I go.
> 
> As for the antithyroid drugs (carbimazole). People kep saying that you can't stay on them long term because they can damage your liver. Is this true or is this just one of those silly rumours circulating?*I believe it is only extremely high doses that cause liver damage*
> 
> I really don't want to have RAI. Only because I had to throw in my job and if I have to go through another period of my levels going stupid all over again I don't think I could cope. If I could stay on the carbimazole for life I would be okay with that. Is there another option to carbimazole that isn't damaging to the liver / bones etc?


 *If your doctor will let you it's perfectly fine to stay on a low dose for the rest of your life - I know of several people who chose the anti thyroid med route who are doing just fine.*

*For me the anti thyroid route wasn;t something I could deal with as I had to change up doses almost monthly.*


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## karen18

Lovlkn said:


> *If your doctor will let you it's perfectly fine to stay on a low dose for the rest of your life - I know of several people who chose the anti thyroid med route who are doing just fine.*
> 
> *For me the anti thyroid route wasn;t something I could deal with as I had to change up doses almost monthly.*


I know what you mean. Even though my levels are classified as in the normal range. I don't feel normal. In fact I don't know what normal feels like anymore...

I'm still having dizzy spells that will just come on for a few seconds, most of the time when I'm actually laying down. I have them like 50 times a day, which is really bizarre!

As for my energy levels, they're slowly getting better. I guess I've only been on the (2.5mg a day) for 1 week. I'm beginning to wonder if my levels returned to normal on their own, and if the carbimazole is just making me feel tired and dizzy?

I'm still a newby to all of this. I have such a mild case of Graves and since being on the 2.5mg a day I had a few heart palpiations and now nothing.

If I'm still dizzy and tired could it be something else? Or are my meds still to high? There's no where to go from here but to zero meds a day..ha-ha.


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