Thyroidectomy and Meds: I had a total... - Thyroid UK

Thyroid UK

141,187 members166,426 posts

Thyroidectomy and Meds

iroc1969_aunt profile image
19 Replies

I had a total thyroidectomy due to papillary thyroid cancer in 1993. I've been cancer free since and doing ok except for the weight gain with T4 only meds. For almost 22 years the Dr. kept my TSH suppressed because they believed it would keep the cancer away. During those years with TSH suppressed I managed to maintain my weigh with only 20 lbs. gained and it stayed there. My weight was 108 before my surgery then up to 128. Since that time, Dr.'s now believe it is no longer necessary to suppress TSH so they're bringing my levels to a more normal level. As a result, I have gained another 10 lbs. Unacceptable. It's impossible to lose that weight no matter what I try. I tried T4 with T3 meds for a while but I felt so tired and Dr. couldn't get them adjusted well. I lost a lot of hair during that transition period also so I went back on T4 only meds. I feel better but am unable to get the extra weight off. Does anyone have any suggestions or thoughts about their experience? My last readings were - TSH 1.10 (Range .5-6.00), FT3 162 (range 200-490 pg/dL), FT4 2.0 (Range .7-1.8 ng/dL) I'm in the US, not sure if that matters.

Written by
iroc1969_aunt profile image
iroc1969_aunt
To view profiles and participate in discussions please or .
Read more about...
19 Replies
greygoose profile image
greygoose

I think it matters that you're in the US due to the T4 and T3 results. That is definitely not an FT3 you've given us there. It's a TT3. I'm not sure about the T4 but I don't think it's Free. And I do know that in the US the labs tend to test Totals rather than Frees. But, that's not helpful. It doesn't give us the information we need, I'm afraid. Although, given that your TT3 is under-range, you're pretty likely to be under-medicated, now. Dosing by the TSH is just not a good idea. It usually ends with an under-medicated patient. :(

jimh111 profile image
jimh111 in reply togreygoose

It is fT3 as the 200-490 pg/dL reference interval is typical for free T3, if it were total T3 it would be something like 80-220 ng/dL (note ng and pg, a factor of 1,000). However, the fT3 figure is low. I wonder how much L-T3 was prescribed, perhaps it was too little.

As TSH was kept suppressed for a long time it's quite likely the hypothalamic pituitary axis was down-regulated. In plain English the TSH ends up lower than it should be, it doesn't respond as well as it should because it has been knocked back for so long. This might recover in time, it might not. The consequence of an abnormally low TSH (for corresponding fT3, fT4 levels) is that T4 to T3 conversion can be impaired, meaning the patient needs T3, maybe 20 or 40 mcg.

greygoose profile image
greygoose in reply tojimh111

Really? I've never seen that range before. We learn something new every day. :) How about the T4 range?

jimh111 profile image
jimh111 in reply togreygoose

I found the USA ref interval via Google. Can you try and look up the fT4 one as I'm tied up at the mo.

greygoose profile image
greygoose in reply tojimh111

OK :)

iroc1969_aunt profile image
iroc1969_aunt in reply togreygoose

I'm not sure. The labs are marked as Free t3. I know it's not good to only look at TSH. I get so angry at the thyroid specialist that only look at that. I'm on 125 generic Synthroid only. Thanks

greygoose profile image
greygoose in reply toiroc1969_aunt

Sorry, I made a mistake, as jim explains above. So, it is very, very low and you are therefore very hypo. Not surprising you've put on weight. They are so ignorant! There's little wrong with having a supressed TSH, especially if you're taking T3.

iroc1969_aunt profile image
iroc1969_aunt in reply togreygoose

Oh, they're claiming my age is a factor to having a lower TSH. I'm 70 years old. It seems there's an excuse for anything they don't know about.

greygoose profile image
greygoose in reply toiroc1969_aunt

That's new! Usually they claim that being older, you need your TSH higher - but that's only when they don't want to diagnose or give you an increase in dose. They make it up as they go along. You just can't trust anything they say.

SlowDragon profile image
SlowDragonAdministrator

You also need vitamin D, folate, ferritin and B12 tested. These need to be optimal

iroc1969_aunt profile image
iroc1969_aunt in reply toSlowDragon

Thank you for your reply, I take Vitamin D and my levels for folate, ferritin and B12 are ok.

Pheonix15 profile image
Pheonix15

I also had thyroidectamy I had follicular cancer about 7 years ago. I have been wanting to know about TSH suppression also. I am currently on T4 100 amd 125 alternating and thinking of trialling T3 my TSH is just above 0 generally, my T4 is around 20. The parameters at local hospital for T4 are 7.8 to 15. I have increased weight by 50% Plus had hypercalciemia and hair loss when altering doses. I am experiancing hypothyroid symptoms when telling my GP it feels like they are not listening. I didn't know that TSH suppression isn't considered necessary anymore. I also have cortisol 100 at 9.am.synacthen test was done I was ok thank goodness Lately it's constant chest infections plantar fasciitis again. Fatigue breathlessness. The NHS doctors just say results normal. I am going to see private hoping for an improvement. My sis has just started T3 she has been extremely ill for over a year since starting T3 it has been a miracle. It was dreadful seeing her like that. It turns out she wasn't converting it has only been through her own fortitude and help from Thyroid uk that she has got through it. Thank you Thyroid uk. Plus her GP learnt a lot about this condition through her he seemed very helpful treated his patient with patience which is very hard to find these days A doctor who listens to what your saying to them

iroc1969_aunt profile image
iroc1969_aunt in reply toPheonix15

Good luck. Yes, it is so hard to find a GP who listens. They just don't know what they don't know, I guess.

Rosebud1955 profile image
Rosebud1955 in reply toPheonix15

Hi Phoenix 15, just read your post. I’m also struggling with my thyroid dosage, I had TT 2 years ago for papillary, have not been well since, i’m under medicated like many others, it’s a struggle. I have developed severe plantar fasciitis and bone spurs, almost immobile. Doctors have no clue how to help me relieve the excruciating pain. When I asked if it could be related to my thyroid disorder, they quickly shrug me off. I’m so frustrated, i’m missing out on summer because I can’t even walk for 5 minutes before the pain becomes unbearable. How are the doctors treating your fasciitis? I’m desperate to get some relief from the pain.

If any forum members have a similar problem, please share your experience/ solution. So i’m assuming that being hypothyroid can be a reason for plantar fasciitis. I cannot believe that doctors are so limited in their medical knowledge. For the past year since I discovered this forum, I have gained more knowledge than I have gained from my endocrinologist and G.P combined. I’m still not where I should be as yet, but the members and administrators have saved my life, I was heading into deep depression, very lost, and was ready to give up. I can now function in spite of the lack of empathy and care from the “so called “ doctors. A big thank you to everyone, keep up the good works. I wish everyone improved health as we all fight this battle. God bless.

Pheonix15 profile image
Pheonix15 in reply toRosebud1955

I had plantar fasciitis same time I had thyroidectamy. I had physio it didn't work. Eventually I had steroid injection it went away. So that's what I'm waiting for again. Keep doing exercises that stretch the back of your leg. Hope it's sorted for you soon. I googled plantar fasciitis and thyroid problems it's linked

Rosebud1955 profile image
Rosebud1955 in reply toPheonix15

Thanks for taking the time to reply, that will hell me make my decision on treatment. I heard by many others that physio does not help. I was offered steroid injections but was reluctant to have injections. Nice to hear that you had relief the first time. I will follow through with the offer for injections. Thank you very much, I hope you get the same relief the second time around.

God bless.

Batty1 profile image
Batty1

I have no thyroid due to pap cancer and gained 50lbs.

I gained 35lbs of this 50 pretty fast a year or so with only T4 treatment and leveled off once I added T3 but, I also had a Psoriatic arthritis flare after thyroidectomy that also contributed to my weight issues I was left house bound for over a year....and add menopause to the mix and Doctors that get their degrees from a cracker jack box, your pretty much doomed.

iroc1969_aunt profile image
iroc1969_aunt in reply toBatty1

I'm so sorry. Good luck with the T3.

I have had the same total Thyroidectomy. I found Gluten and Lacto free foods plus plenty of veg helped a lot with some exercise. (I have Levo meds only). Hope this helps

Not what you're looking for?

You may also like...

Experience going OFF thyroid meds?

Hi all. This is my first time asking a question here. I'm wondering if it's possible or if anyone...

Please help interpret my blood test results

Hi, I'm new here. Please help me interpret my blood test results. What I show is all that was...
Susiegood profile image

Thyroid Suppression? Hashimotos & armour

I am 25 years old, and was diagnosed with Hashimoto’s about 3 years ago. I have been on 60mg of...
hollieerin profile image

Starting T3 meds for high rT3 soon, help?

I haven't been on the forum long, but have gained so much knowledge in the last few weeks leading...
dell500 profile image

Weight loss on meds?

How long did it take to lose weight after starting meds? I’ve been on NT for a few months, just...
kikiweight profile image

Moderation team

See all
PurpleNails profile image
PurpleNailsAdministrator
RedApple profile image
RedAppleAdministrator
helvella profile image
helvellaAdministrator

Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.

Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.