Underactive thyroid after partial thyroidectomy

Hormones
1

Hi

I had a partial thyroidectomy nearly a year ago to remove a non-malignant cyst.  Everything healed quite well and I was told that I probably wouldn't need thyroxine as my remaining thyroid would compensate.  However, a recent blood test has shown than although my pituitary gland is releasing the appropriate chemicals, my thyroxine levels are only just 'normal'. My GP has said that I will probably need to take thyroid hormone supplement soon.

Up till recently I had been feeling quite well - no symptoms that are normally associated with an underactive thyroid.  However, over the past few weeks I have been experiencing some light-headedness which comes and goes.  It feels as if I'm a bit 'spaced out'.  I mentioned it to my GP but she didn't suggest that it might be anything to do with my thyroid so I wonder if anybody here has had a similar experience? It never happens when I'm lying down. I'd be grateful for any input from anyone who had a similar operation to mine and the long term effects that they've experienced.

2

Hi Pat,  I had a partial thyroidectomy 29 years ago - they removed the right side of my thyroid gland because of three nodules that I had there after the birth of my third child.  I was in the hospital for about five days and then sent home with a prescription for 100mcg of Oroxine which I was told there was no hurry to start taking but start taking it within the following three weeks.  I was told that by taking the Oroxine the remaining side of my thyroid would get the message to just go to sleep and I would need to take the Oroxine for the rest of my life.  I have not had any problems with taking the Oroxine.

These days I notice that things have changed for patients with partial thyroidectomies.  I have personally observed people with only half of their thyroid remaining being told by doctors that there is no need for medication as the half thyroid will be able to cope with all the work.  Wrong!  I have seen these people gain massive amounts of weight whilst their doctors observe only their TSH readings and then offer them 'Blood pressure medication', 'diabeties medication' and 'cholesterol medication' - all the time encouraging them to do the impossible and lose the weight.

What you are probably experiencing is 'brain fog' as you slowly slip into hypothyroidism.  You must research the thyroid condition for yourself and become knowledgeable about it so that you can stand up for yourself and put your point of view accross to the doctor.  I would say it is very likely that you will need some thyroxine at some time in the future.  If not satisified with your doctor get a second opinion and always get a copy of thyroid blood tests. 

3

Thanks for your reply - your reference to 'brain fog' is a good way to describe how I feel. I'm disappointed that I seem to have been misled into believing that the remaining part of my thyroid would compensate and it quite clearly isn't!  I'm sure you're right that I'll need to start taking thyroxine in the near future though I've read many negative comments from people who take it.  It's quite reassuring that you had a similar operation to me, and you've been taking oroxine for so long without any unpleasant side effects.  I hope the same will be true for me!

4

I had a partial left thyroidectomy in my 20s, was put on synthetic replacement and my Heath continued to decline. I had to have my gall bladder removed, plastic (facial) surgery. I was diagnosed with plantar fasciitis, piriformis syndrome. I lost my sense of taste and smell. Your thyroid runs everything. My body could not convert synthetic T4 to T3. There are about 200 more symptoms I'm not listing.

I went on natural desiccated thyroid replacement and all my symptoms resolved. Proper dosage and monitoring is key. Trust how you feel, trust blood work/lab results secondary.

5

Hi again Pat,  After reading tereseV's post I have given some further thought to your situation.  As there is always the chance that your body might not convert the synthetic T4 (thyroxine) as well as mine did.  This is an unknown factor to you at this stage - so it could be a gamble to start taking thyroid medication.  You say you had your partial thyroidectomy nearly a year ago so it appears that your existing thyroid has been keeping you going fairly well until now when you are starting to experience a few changes in your health.  There are quite a few supplements that thyroid patients should be taking - some of them are:  Iron .. even if within the range, some sort of iron will help.  Your thyroid can not convert T4 to T3 without adequate amounts of it.  B12 is another one, also Vitamin D3 and Zinc.  If you take the supplements you may be able to help your thyroid to manage but keep in mind that you may need some thyroid medication at some time in the future.  If you are in Great Britain then the synthetic medication may be all that you will be able to obtain and that can be a big problem for those who don't convert T4 to T3 well.  I understand that the natural thyroid medications seem to be a superior choice but unfortunately I can't get them here in Australia either.

Do look after yourself and research all you can online about the thyroid. Be alert to any new symptoms that may point to hypothyroidism.  Weight gain, fatigue, abnormally cold legs/hands are some of the more prominent ones.  After you enlighten yourself with the research you will be more confident about your situation and better able to consult with your doctor.  Don't allow doctors to drag you on in poor health for years based only on blood test results.  They must consider your symptoms and they must test for T4 and T3 when they test for TSH.  Keep copies of all blood tests.

6

Hi Sketchy

Again, thanks for all your input - it's been invaluable.  I now realise that I know so little about the thyroid and am now trying to understand its complicated mechanisms.  Armed with these I will feel more confident if I need to challenge my GP in the near future.  I've also asked for copies of my blood tests so that I can see clearly any changes in T3 and T4 levels. Thanks for pointing out the more prominent symptoms of hypothyroidism - aside from the 'brain fog' I'm certainly feeling more fatigued than I used to when I exert myself - taking the dogs for a walk for instance.  So as you suggest, I'll probably need medication before too long - and I don't suppose I'll have any choice but the synthetic one!  Again, thank you for all your advice and support.

7

Hi Sketchy

I took your advice and obtained copies of the thyroid tests done by my GP. The result shows that my TSH level is 5.24 miu/L; I think that this suggests that my pituitary and hypothalmus are functioning appropriately.  However my T4 level is 12.0 pmo/L which seems to be only just within range (12.0-22.0).  This suggests that there is insufficient T4 to convert into T3 (am I correct? - this is all very new to me!) It is ten months since my operation.  Do you think that I have no alternative but to use thyroxine - or do I have any alternatives?  I am quite nervous of starting medication if I can possibly avoid it. Is it possible that my remaining thyroid might manage to compensate for the missing half, given enough time?  My symptoms at the moment seem to be limited to a 'foggy brain' which is very unpleasant (it seems to come and go at present). But will things get worse so that I begin to experience the more well known symptoms of hypothyroidism.

8

Hi Pat,  I'm glad that you obtained the copies of your thyroid tests (you must always do this).  Unfortunately most Gp's are inept when it comes to treating thyroid patients so we must look out for ourselves if we want to remain healthy.  It's a sad state of affairs!

Your TSH level at 5.24 is 'outside' the normal range which should be below 2 .0 and it is pointing towards hypothyroidism.  Your T4 is low and should be in the top half of the reference range (mine is 18).  It appears that FT3 was not tested therefore we are unable to know how much T3 is actually being produced.  

According to me It would appear that your remaining thyroid is struggling somewhat.  As I mentioned in one of my earlier comments it is possible to help the remaining thyroid to perhaps function better by giving it the supplements needed to boost it's performance.  You can google those supplements on some of the thyroid sites to get more information about them.  I have found that iron is crucial for me - although the doctors will tell me that my iron levels (ferritin) are ok (within the range) when I take some extra iron I seem to stave off hair loss and achey joints and it is crucial to T4 to T3 conversion. The other vitamins are vitamin D3, B12, Selenium and zinc.  My ferritin levels rose from 76 to 93 and if I go slack on the iron they drop and aches come back.

A word about the brain fog.  (This happened to me a couple of years ago when an inept doc dropped my 100mcg Oroxine to 75mcg.) The thing I found about it is this - when it continues, due to lack of thyroid hormone I became quite dopey, didn't want to leave the house, do anything, didn't want to drive, see friends, make art etc.  It crept up on me slowly until I came down with a terrible flu (don't usually get them) and could not throw it off due to the lowered immune system.  I got to the stage that through the fog I realised that I might die and I was freezing cold.  Somehow, I decided to take my temperature and it was 35.8 celsius, later it dropped to 35.2.  I suddenly realised that I had become hypothyroid and I remembered the change in the Oroxine dose.  I was furious because I had complained to the doctor who had made the change only weeks after she did it and she flatly refused to allow me to raise the dose instead gave me a prescription for anti-depressants.  My husband dragged me to the doctors office where I saw another doctor, got antibiotics and I told him I was raising my Oroxine dose back to where it should be.  Been fine ever since.

So, you could try the iron and vitamin supplements but if you don't feel you are doing well after several months you may have to get another blood test done and start taking some thyroxine.  If so, be sure to start with a small dose and you may eventually have to build up the dose over time.  It takes time to establish the correct dose for you.

 

9

Hi Sketchy

Again, I'm indebted to you for the information and suggestions - this is a steep learning curve for me. Fortunately my husband is helping me to research the implications of possible hypothyroidism and helping me to understand it too!  It seems that my hypothalmus is having to work too hard to try to make up the shortfall and failing?  I should have mentioned that I've been taking a timed release multi-vitamin and mineral tablet for over a year now so maybe that suggests that I can't support my remaining thyroid any more than I am doing.  I do have a good diet with plenty of selenium and iodine.  There is one issue that I haven't mentioned: my doctor prescribed Proton Pump inhibitors approximately eight months ago for gastric reflux (probably caused by a long period of extreme stress caring for a sick relative).  I had no idea that PPIs could be so deadly: after about 4 months on them I developed chronic diarrhoea which lasted for 4 weeks.  It was then that I started doing research and found that PPIs can prevent absorption of things like B12, selenium etc.  If I'd known then what I know now I would never have taken them and would have managed my reflux myself, but doctors seem to prescribe them like smarties as if they're absolutely harmless.  Once I stopped taking them, everything eventually settled down but I wonder if they did do me some harm.  Anyway, whether they did or not, I know you're right about me being hypothyroid and needing medication.   

I'm very glad that you stood up for yourself and got the medication you needed - hopefully with my new found knowledge, I'll be able to do the same. 

Thank you again.

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Yes I've been given , cholesterol and blood pressure tablets too, but it's not working , think your right if my latest blood results come back normal I will get a second opinion, as they've done, cholesterol , and sugar tests today

11

I had a partial thyroidectomy just over a year ago due to large goitre in it. I too was told wouldn't need medication as the other half would do all the work. Since the op I have been dolly putting on weight, very tired all the time and feel very low. Have been taking prescribed anti depressants, which I do not like taking and I find it very difficult to sleep for any long periods of time. I had to ask my doctor this week if I could have blood test to check my thyroxine levels . They usually come back bordering on the normal do no medication is given. Becoming more tired and fatter is probably the cause of me feeling low . How do you get them to listen to you. I've been trying for six months only to be given more anti depressants. These must be cheaper than the thyroid treatment tablets

12

What iron did you use to raise your levels?

My whole iron panel is low

Ferritin is 39

13

My story is similar to yours, I had a partial thyroidectomy in 2015 and was told I didn't need any thyroid supplement but recent blood test showed that my t4 levels are low but my t3 levels are normal, my question is does that mean I would need some type of supplement for this because the nurse that called me with the results only discuss the results but no answers for what I should do.

14

I had a partial thyroidectomy when I was about 30 (I'm now 58).  I didn't make know anything about they thyroid at the time and wasn't given any medication at all - just told to have my levels monitored every two years.  Over the years my weight gradually increased and I  struggled to lose any.  I went from 11 stone to now 15!  About ten years ago I developed pins and needles in my hands and arms, muscle cramps and low mood, also a feeling of pressure in my neck.  My bloods showed underactive thyroid and I was s ta rated on 50 mcg thyyroxine.  I read a lot and joined the Thyroid Society (well worth it - loads of advice and support for a minimal subscription). My GP seems to know very little and I realised that I need t be armed with reliable information before speaking to the GP.  Two years ago I paid to see an endocrinologist who now monitors me and my prescription was increased to 100/125 - I feel much better again - not perfect but better.  Sometimes it's hard to know what symptoms are down to your thyroid.  I wish you all the best in your journey. Take care of yourself.

15

Hi

I'm 39 and about to undergo partial thyroid removal due to enlarged nodules . However the surgeon explained to me today that because I have an enlarged nodule on the left side too that he was contemplating a full removal of my thyroid but due to my age he thought only p artical removal is necessary and the nodule on left side could be monitored on a yearly basis .. however I may have to undergo surgery again in the future to remove the thyroid fully ( hope I'm making sense) reading about people's experiences on this site I'm concerned if the concequenes of partial removal as I feel it dosent seem to solve the problem .. fatigue , Weight issues , depression etc. I have had all these symptoms however nothing has ever showed up in blood tests . I am really concerned that this op won't solve anything and symptoms will continue until eventually they will deciede to remove the left side too . I'm just wondering if anybody could advise me on how to approach this . Or anyone with similar experience . I would be so grateful for any feed back whats so ever

Many Thanks

16

I had partial thyroidectomy when i was in teens, I didn't get fat till I was 40 nor was I on any meds, I wasnt depressed I probably didnt have as much energy as most of my friends but I still enjoyed that part after the op...

I was a not big at all it was only when i started taking Levothyroxine because I had become Hypothyroid which was what the professor had predicted but I didnt know what Hypo was then as Internet wasnt about then >

...., I think my hair suffered a bit as never grew, I was unable to have kids to which I am now told I was probably Hypo and because I was skinny they didnt really take much notice. anyway, I think at times I may have struggled more than i think.. I sort of wished now I had just taken meds to not become hyperthyroid, but at that age I had opted to have OP 40 seemed like years decades away and thought i would be dead by then tbh lol  I didnt want to be on meds every day. so partial ?sub Thyroidectomy seemed the better option at the time , the scar was quite raw for few years then you forget about it, probably smaller these days smile ....

If I was you tbh I would get a 2nd opinion or even 3rd by a surgeon as they dont all think the same ....

on if you really need a sub part or full thyroidectomy and check how many thyroidectomy  your surgeon has done in the past as , if he hasn't done many I personally wouldn't of trusted them..ask if he has ever lost a patient doing one, all these things you need to know , not scaring you as it has happened and especially onto so experienced surgeons .. 

I had a Professor who was an excellent surgeon do mine, but he never warned me about how bad Hypothyroid would be in my latter part of life or I think I would of not had it done..

just do your research on surgeons and if you have it all out you will be on Levothyroxine for your rest of your life, a prt thyroidectomy if surgeon isn't experienced could well make you hypo with it 1st time and you could be on Meds all your life,

,, take your time, read lots ask lots of people what they have done how they felt, would they do it given the choice again ? , ( as you have)

, the op itself hurts a little but not for long, I felt bad for about 2 years after mine, they said all bloods were normal but we all take different  times to heal... all I say is research research and more research, different opinions just dont take one Surgeons advice unless you know he's ace at his job...

Good luck keep us informed to what you do or do not do smile take care ...

 

17

Caroline have they tested your T4 and T3  as many drs only test TSH which is not good if you have had thyroidectomy you need to have TSH, T4 and T3 tested else you could be hypothyroid... ,, saying that it took me over 2 years to start feeling ok so maybe you are still healing.. I hope you feel better soon or they check the correct bloods to make sure you are Hypo or not, I never put on weight till I become Hypothyroid so I would get all these bloods tested even if you have to pay private for them.. drs dont seem to care or maybe know how to look for hypo.. good luck XX

18

My situation was different but there was the decisions to be made...

I was given the option of total removal now or wait and see for 12 months. If I waited, the operation was going to be more difficult so I opted for do it now.

I had the operation 4 weeks ago and so far, not too bad. It takes months to get the thyroxine dosage right.

My problem is a loss of voice. Nothing more than a hoarse whisper so far but the ENT surgeon is sure the voice box is OK and the nerves are working so it will just take time to heal.

My wife had a total thyroidectomy 4 years ago and she is doing well. No voice problems and no other issues we can blame on the thyroid.

If you have a partial, you may be able to go without daily medications which is good.

If you go with the total, you know there are no more operations to look forward to which is also good.

Taking thyroxine daily is no big deal. If your parathyroids are damaged, you will also need calcium daily.

 

19

Hi,

I had a left thyroidectomy November 2016. My levels have been normal. I had the procedure b/c of a nodule. I also have small nodules on remaining right side. Have had lab work several times. I keep copies and graphed. Everything is normal. Due for another appointment in April and labs. Starting  aweek ago I have been having palpitations in the middle of the night. I thought it was a panic attack but I thought this morning and realized that my endocrinologist ask at every visit if I am having night sweats and palpitations. So I’m interested to see what my levels are now. 

Also my appetite has changed. Eating more than usual. 

Calling today for an early apt with my endocrinologist. 

Anyone experience the palpitations. 

Concerned. 

20

 I am just like you Gail, only barely out of the operating room. I had a partial thyroidectomy on the left side plus removal of a nodule four days ago. Haven’t even had my postop visit yet. Anyway from the moment I woke up this morning I feel so dizzy I can’t even stand it. I just laid down on the couch and don’t want to move because when I sit up I get super dizzy again. Would this have something to do with the thyroid issue or  is it too soon to anticipate something like this happening?  I have my  Postop appointment this coming Tuesday but if anyone knows anything about this I would really appreciate a little note here.