[hils]

#1059023

Hi! everyone

I was diagnosed with HYPOthyroidism in 2009 & did not do well on Levothyroxine, so I started taking Natural Dessicated Thyroid (NDT) which I purchased from Canada, I live in the UK and we can’t get Erfa/Armour unless we purchase it from another country.

I had been doing so well on Erfa & T3 for about 2 1/2 years. I had been losing weight gradually since getting my meds right.
I went to see the endo Feb 2011 to ask if I could have the above meds prescribed on the NHS as Hubby had been made redundant & I we were finding it very difficult to pay for the meds, he agreed to prescribe T3 on NHS, when he looked at my bloods he said I was doing remarkably well going it alone, at this visit they took my weight.

Then it all went downhill from there I started losing weight rapidly, hand tremors, loose motions ( put it sown to 2 family deaths ) still felt
okay but people started to comment on how ill I looked, my friend urged me to go to the doctors, booked appointment & on morning of my appointment I woke up with a very painful eye which was swollen, light really hurt my eye, had to wear sun glasses in the house, my doctor said it could be graves disease & sent me to see the same endo October 2011 I had lost 1. 1/2 stone since seeing him in Feb.He was shocked when he saw me & agreed with doctor it was graves disease.

Since October 2011 I have been seeing the endo every 3 weeks & blood tests every 2 weeks. Had an MRI scan of my eyes which showed some deterioration, seen the eye specialist 4 times. I have been taking carbimazole for Hyper active. 3 x 5mg twice daily

On one visit 6th March he said I was showing signs of being Hypo again and put me on 50mg Levothyroxine & 30mg Carbimazole

The endo said he wanted me to have my thyroid removed as it is going to be very difficult to treat me as it was pot luck which receptors picked up the signal
meaning the receptors are picking up both signals and depends which receptors are the MOST ACTIVE at the time the signals are sent, which in turn determines which ones pick up the signals ie making me overactive or underactive.

My last visit to the Endo was Monday 30th Apr The appointment with the ENDO didn’t go well & I didn’t get the chance to pull out my list of questions as there would have been no point. I was the last appointment of the day, I sat down endo asked how I had been I sat there and I know I was glaring at him said I felt angry told him that I had been swinging both ways. He said the last bloods done on Wednesday showing I was going HYPER !!!!!

I tried to have a meaningful conversation with him I asked if he thought I could be suffering from Hashis & before he would let me finish he went all defensive & said I HAD GRAVES NO DOUBT ABOUT IT I tried to say that I was asking him if I had Hashis as well as Graves he just would not let me finish the sentence so much so that I was trying to speak super fast to get my question across before he talked over me.

He now wants me to increase the Carbimazole to 50 mg and cut out the
levothyroxine completely, he said the way I was feeling was because of the T3
spikes, he said the only way was to get the thyroid removed the quicker the
better.

I am finding it very difficult to concentrate, I FEEL TERRIBLE.. not sleeping,
having terrible rages, confused, tired, sickly, headache the list goes on & on..
I have spent most of the week in bed feeling lousy and very very sorry for myself.

Blood test done in 2010 showed TPO antibodies @ 1300 U/ml .. ref range 0-60
I was taking NDT and T3 at the time of this blood test..

Blood test done in 2011 showed TPO antibodies @ 958 U/mL ref range 0.00 – 9.00
I was taking 30mg Carbimazole at the time of this blood test..

Oh! I nearly forgot I see the surgeon on the 30th May

Hope someone can please offer some advice?

kind regards

Hilary

[Kimberly]

#1171624

Hello and welcome to our forum!

I can imagine that the hypo/hyper rollercoaster has left you feeling miserable. Some patients do end up getting diagnosed with both Graves’ and Hashi’s. I’ve seen some patients deal with this via *very* frequent monitoring and adjustment of medications as needed, while others have opted for surgery and replacement hormone. Another quirk is that sometimes Graves’ can actually produce antibodies that will block thyroid hormone production instead of stimulating it (which is the more normal case).

In terms of getting you a definitive diagnosis, we’re all fellow patients here, so we can’t tell you if you do or don’t have both conditions.

I know that it can be difficult to request a second opinion from an endo if you are using the NHS, but would you have an option to go outside the system for a second opinion? You absolutely deserve to have a doctors who will answer your questions carefully and treat you with respect.

Take care — and please keep us posted!

[hils]

#1171625

Hi! Kimberly

Thank You! so much for replying, sorry it has taken me so long to reply to your post but I have been having problems with my internet connection (router)

I have done what the consultant asked & upped my dose of carbimazole to 50mg but I have started including the Levothyroxine 50mg again as I have been feeling really awful on just the carbimazole.

Do you know of anyone else being Hypo first for so long just over 2.1/2 years before being diagnosed with Graves?

Many thanks!

Hilary

[Bobbi]

#1171626

Hi, Hilary:

It really is not wise to tinker with the meds on your own. The doctor — any doctor– will have no idea how to adjust the meds to maximize their efficiency for you, if you are tinkering. I do know that it is difficult waiting to see the doctor when you feel completely off, but if you don’t you will only be increasing the likelihood of being on a constant hormonal roller coaster.

There are individuals who have the antibodies associated with both Hashi’s and Graves. It makes for difficulties in controlling thyroid levels. When I was doing my first research when I got Graves, the information that I had said that doctors preferred to eliminate the thyroid in cases like yours. That is was easier to get constant thyroid levels without the thyroid. I don’t know if that advice has changed any.

I do hope you are feeling better soon.

[Author]

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