TSH up and down like a yo yo this past 6 months and Its really wearing me down.

[MrsBargirl]

Very long story short. Total Thyroidectomy in 2007 over the next 10 years it grew back. Had it removed again in March of this year. After 1st surgery and until 2nd surgery I was on 75mcg of levothyroxine with little to no issues. Since March my TSH is up and down like a yo yo. 0.2 - 4.2 roughly the guide. It has been 72.2, 11, 2.99, 12. Its really getting me down with all the symptoms. Has it taken anyone else this long to get settled. I'm currently on 125mcg and 150mcg alternate days.

[MMAndrea52]

Hi I am intrigued by your thyroid growing back as you say. How strange. I wish mine would. I had TT November 2017. Iv never been the same since, fluctuating TSH. Low T3. They say I am over medicated even tho I was on less than 100mcg levythroxine. They now want me to reduce to 75mcg. Look at my profile. It’s a bloody nightmare. Can I ask if you had hardly no issue s after first op, why did they remove your thyroid again. From what iv learnt that beautiful butterfly shaped gland is very important in all our bodies function and without it. On whatever replacement, sadly we shall never be the same. Can I also ask what symptoms you get now. I am always tired, my house is a complete dump since my op. But that’s the least of my worries. Anxiety was terrible, got it under control a lot more now.

[MrsBargirl in reply to MMAndrea52]

My 1st surgeon was a bit of a gangster to be honest and I don't think it was fully removed. Promised me my life would go on as normal except for a tablet every day. I like yourself haven't been the same had to give up get nursing work at. And he said I could go on holiday for a month without taking the thyroxine!! Load of crap. The regrow 'thyroid was pressing against my windpipe causing choking and difficulty in sleeping as I couldn't lie on my back. Now my symptoms are weight gain, either too tired or not at all, hair loss/thinking, sweating like a pig!! And headaches.

[MMAndrea52 in reply to MrsBargirl]

Wow, well thankfully . . Touch wood, I don’t have all them symptoms no weight gain, in fact iv stayed the same weight pre op, give and take a pound or 2 depending on the day. I weigh just under 9stone. On a good day I reach 9stone, but usually dip back down to 8.10/11/12. I sleep well most nights. But as I say I’m usually tired in the day. Had to cut down on gluten big time, tho do enjoy the odd butty, pasty or pasta ha. Cut dairy out. Use almond milk now. I eat 2 Brazil nuts a day + a small piece of v dark chocolate for the magnesium + selenium. I take a quality b complex, and a vit d on darker days. Mostly eat a healthy diet but even organics got organic chemicals these days. I try to exercise 3x a week. It’s like I have to work a 100x more these days just to function to a varying degree. I use holistic therapies. Ie reiki, meditation, mindfulness, reflexology etc. I know if I let go of the grip iv got now I’d lose control completely. So with the love and support of my partner, children, brother and friends + my own spirit, soul and awakened consiousness. I will get through this. Much peace and love to you girl. Stay strong. And keep on trucking. 💕✌🏼

[MrsBargirl in reply to MMAndrea52]

Thanks. Post 1st I'm I was 8.5 stone and underweight now I'm 11 stone but I'm tall can only notice in my clothes. I think tomor I will phone go and get referred to my endo asos don't seem to fully understand. Its wearing me down and have been getting bloods done every 4 wks since I came out of hospital! #pincushion. Thanks for your kind words of encouragement it's great here and you know you are never alone x

[Haze1975 in reply to MrsBargirl]

It’s hard enough to go throw the operations the first time. And than for a second time, 10 years later. Pour you Mrs bargirl. Hopefully your doing alright.

[Haze1975 in reply to MMAndrea52]

On different post before. I’ve heard that people thyroid can growing back if there not careful. In some cases you have to be careful. Because anyone who had cancer in the thyroid both can grow back. (But don’t quote me on it, as not a medical doctor.)

[MrsBargirl in reply to Haze1975]

Hi my surgeon got it tested and thankfully it was non cancerous. He reckons it's just part of my make up and it could regrow. Said if tonsils were removed they would more than likely grow again too!!

[autowhen in reply to MrsBargirl]

I had my tonsils regrow, had them taken out twice as a child. It can happen. But not great to have to go through a second operation!

[MrsBargirl in reply to autowhen]

I was dreading it as one of my vocal chords is damaged and there was a chance of having to get a trach tube fitted. The recovery was much better this time around apart from the thyroid levels!

[Arlenka]

I had my thyroid removed 40 years ago. Due to hormone fluctuations I’ve struggled with weight gain, medication ups and downs. I thought I finally got things levelled out then 2 1/2 years ago the doctor decided that they should reduce my tablets by .5 as they were concerned with my heart and the effects the medication over a long time.. fast forward to today and I’ve plunked on nearly 2 stone!! Personally I think that the added weight is much more detrimental to my heart. Finally after seeing 3 doctors the fourth (bless him) is going to send me to an endrocologist. One previous doctor told me that the UK is now known for obesity. So, do I want to be one of the obese statistics. NO!!

Anyway, sorry for going on so long. Do hope you get it sorted. x

[MrsBargirl in reply to Arlenka]

I have requested to see an endocrinologist. Hopefully not be left waiting much longer. I said that the symptoms are really getting me down and basically a pain in the ass too!!