Thyroid surgery need advice

[Allenabc]

help please, I’m going around in circles. I had subtotal thyroidectomy in March, apparently I have a small amount of thyroid remaining. A few weeks after surgery my Tsh was 1.26, I am feeling rubbish, thinning hair, put on weight and going to bed at 9 until 7, so unlike me. My Dr sent for bloods after 6 weeks and my Tsh is now 4.57, she started thyroxine 50. After 3 days I was so unwell, sweating, boiling hot, agitated, couldn’t sleep at all and really bad joint pains. Dr told me to stop the thyroxine and have bloods taken in 3 months! I don’t know where to go with this I just feel so dreadful. Any advice please

50 is usually quite a low dose but it sounds like it made you hyper. Is there an option to do 25mcg daily or every other day to see if you can get stable on a lower dose?

How old are you? sweating, boiling hot, agitated, couldn’t sleep at all and really bad joint pains is typical menopause symptoms.

I had the same op as you, the remaining part of the thyroid is more nodule than anything else according to the ultrasound. I think I'm hypothyroidic (made up word!) as tired ATT, can't lose weight and dry skin. Currently take 50mcg one day and 100mcg the next - going to the Dr next week to organise a FNB and bloods.

Oh, and try to get to see an endocrinologist, private if necessary, rather than a GP.

Hi eyeswideawake, I’m 64 so definitely not menopause. Joint pain is awful, I can barely hold a cup. Before operation I was fit, 63k, gym, Pilates, thick head of hair and very active. I’m like a slug now. Dr just won’t see me

I agree, if you can, see an endocrinologist privately. I have Graves' Disease (auto immune over active thyroid) and your symptoms are the same as mine when I was diagnosed (I'm in remission now).

Do you have Graves’ disease OP? What was your reason for having your thyroid removed? I think you need a referral back to your consultant.

I tried to get a referral back to consultant but he said my care needs to be handled by my GP now because he only does surgery. Totally fobbed off

What diagnosis led to the operation, OP?

I had a huge goitre in my throat that was causing swallowing problems. No can we but it was behind my collar bone so they couldn’t get a good biopsy. This has been such an awful experience, no post surgery back up from anyone

I’d be making myself really vocal at my GP for a referral back to your consultant OP. No way should you be left waiting on blood tests and being unmedicated. To me it sounds like you’ve gone under active now. Your remaining piece of thyroid is not working properly. You need to be firm here. You also need to get copies of all blood tests and learn how to read them. There are useful Facebook pages that can help.

I'm sorry to hear that, OP

Definitely go and try to insist on some kind of intervention at your GP, but in the meantime you should go over to the Thyroid UK forum on healthunlocked (https://healthunlocked.com/thyroiduk) to ask for help. It's fully of absolute experts in relation to thyroid matters.

I hope somebody will do something about this for you

Thank you for your advice, my husband has written a complaint to the Practice Manager at our GP today. I will contact the Thyroid UK Foundation when they re open on Tuesday. I honestly have never felt so unwell in my whole life. I can’t wait 3 months to see my GP. I’ve also written to my surgeon’s secretary saying I’m going to give a bad review for lack of aftercare

Hi OP, so sorry that you're having such a hard time! Hope you can find a way forward soon.

My experience with thyroid issues isn't like yours - I was very poorly and fainting all the time, very close to coma - toddler slapping my cheek saying 'wake up mummy' and I was vaguely aware but physically couldn't move...

Initially the blood test showed very OVER active TSH levels, I was given a prescription but I knew it was the wrong diagnosis and never took it to the pharmacy... I held out for another set of blood tests which showed (correctly) that my thyroid was massively UNDER active (I have Hashimoto's which is an auto-immune condition that attacks the thyroid). I then took the Levothyroxine to supplement.

Unfortunately it took a long time to bring it under control. Thyroid hormones can fluctuate wildly when the thyroid is compromised. I had several subsequent test results I never felt the hyperactive 'caffeine jitters' but I would say I felt some version of tired/ exhausted/ bedridden for the best part of 2 years after diagnosis.

My TSH levels have now been 'good' and stable for almost 3 years. I'm still carrying a lot of excess weight and feel tired a lot and my hair is much thinner than before! I think not having a healthy thyroid can just do a number on you... I've also been told to wait 6-8 weeks between each medication change before re-testing - this is standard advice (3 months seems especially long but it's not possible to see results in a week or 2).

Having said all this, the consultant should definitely offer better aftercare and in your shoes I'd max out a credit card paying for a private consultation if that was possible.

Wish you all the best.

Phone OP. You need to phone. It can take weeks for letters to be responded to. You need to make yourself heard. Loudly.

Sign of the times, with my GP you have to send a message via Pathway, they don’t take calls anymore, can take 2 days to get a response

Whilst it's important to sort the situation with your GP don't hold off going private (if you're able to of course), as @WoolyMammoth55 says it can take a good while for the thyroxine to work so the sooner you can start the correct meds the better.

Can I ask how you made it in to remission? Did you have surgery or did you just take meds and it started to get better on its own? It's great to hear of someone having a good outcome with GD, good for you!

I took the carbimazole for about a year. Gradually reducing the dose as I went under active. It wasn't a fun year - and I had pretty much the same horrible symptoms when I under active as I did when overactive! It's been about a year now since I stopped all medication, but I do suspect something might be changing as I've had a few signs (tired, cramps, muscle pains).

Surgery will not give you graves remission. If you have surgery to remove all or part of your thyroid you will still have Graves’ disease. To get into true graves remission, just takes time and a Trabs test to prove you are properly in remission, not just a thyroid blood test to show you are in range. They are 2 different things. Consultants treat thyroids, not Graves so when your bloods are in range they just take you off carb without considering Graves then throw surgery and or RAI at you. Surgery and RAI should be an absolute last resort.

@BatshitCrazyWoman @servedstraight thank you both. Have been on carbimazole for a year now and I have no symptoms but my TSH is still 0.01 ... hopefully it starts to correct itself soon. I was supposed to have a review with endocrinologist in March and they pushed the appt back to September!

@sunflowrsngunpowdr I was on carbimazole for 2.5 years before my levels sorted themselves out consistently. It can take a while.

There is no way 50mcg would have made you over medicated. It's a really low starting dose. If you were, the GP could have verified this by taking a blood test at the time. No need to wait 3 months. What's that going to tell you?

When you first start levo, or when increase dose you can get temporary symptoms of over medication. I've had them multiple times. They tend to go away after a few days.

Thank you for your message. That’s exactly what I thought. The GP said because my Tsh is 4.57 he wants me to stop thyroxine but is not interested in my symptoms. One Dr started me on it then he wants me to stop. Very confusing. I honestly cannot stay awake, eating little but putting on weight, tight chest and I keep getting hot flashes