Feeling hypothyroid after partial thyroidectomy

[Tinatina]

I had a partial thyroidectomy in October 2014 and have been gradually feeling worse everyday following the surgery.

My hair is falling out and is feeling dry, nails breaking, skin dry, I am so tired all the time, feel depressed, itchy skin, weight gain and so on!

I have had several blood test which have shown my cholesterol levels rising doctors phone message was to eat more healthily and exercise more - my diet is healthy skimmed milk only, low fat yogurts, grilled foods, mainly chicken, fish, plenty fruit and veg - I asked what can I change? I excercise a minimum of 3 times a week at my gym attending Les Mills classes and still i am gaining weight and feeling tired after my surgery.

I suggested I felt I may be hypothyroid ? This was dismissed.

In exasperation I insisted on a consultation and asked to see my previous blood tests my cholesterol levels bad have been climbing and is now over 6 however my good are good which doc admitted was usually due to a good diet and excercise regime - so took back the phone comments to eat more healthily and excercise more I thought great might be getting somewhere.

So moved onto my TSH levels my bloods before my operation showed tsh of 0.9 then after 2, then 2.5 then 2.3 - I said they are rising! Surely this proves my remaining load is not functioning and I am hypothyroid ? Which explains my symptoms- doctor said no you are in the normal range!!

I insisted on another blood test which was done I have my results read over the phone and was told everything is normal so I asked for my tsh score and was told its 2.9 therefore normal! But it's gone up again was my reply - yes but it falls in the normal range!

Help - why can't the doctors see that I am hypothyroid I have had one lobe removed feel crap with loads of symptoms and my tsh and cholesterol are rising after every blood test. Why won't they put me on meds? Instead of waiting for me to get worse and reach the accepted levels of tsh they are working to? Before they will agree to meds?

Any advice I am feeling desperate.

[Tinatina]

Thank you so much for your reply I am feeling awful and the doctor keeps saying I am fine I will go back and insist I want to go on treatment the last twice I asked he simply refused saying my bloods are fine.

It really is awful that the doctors are so poor I've been reading so many worrying posts it's frightening!

Thank you again x

[Tinatina]

It's so confusing it seems like I need to be the doctor and tell him where my test results should be !

Except I am unsure what they should be I think I know my TSH should be much lower back to preop figure of 0.9 but I don't know about the other bits such as T3 and T4 and anything else!

I do also know it's the underactiveness of my remaining half of my thyroid causing my cholesterol to keep rising!

Do you know where I could find a chart of what my bloods should be so I can print it off to take with me

Thanks

[shaws in reply to Tinatina]

That's more or less exactly right - we have to be our own doctor.

Someone who has gone through the same experience as you will respond. I would say I think you too are hypothyroid - you have learned that many doctors haven't an idea of whether the patient is hypo or not by ignoring clinical symptoms and diagnosing by the TSH alone.

What you have to do is get an actual print-out from the surgery with the ranges and post. You will then be advised what to ask GP to test for next as sometimes they only do basic TSH and T4.

Clinical symptoms (a higher cholesterol) - unexplained weight gain and inability to lose despite dieting. (metabolism too low = hypo). and so on.

We have to read and learn and ask questions and we eventually know more than many GPs or Endocrinologists and if we want to get well we sometimes have to fathom out (with members' help) a way forward. Have a look at this link for starters - and I am sure it will surprise you. There are also other topics on the left-hand side with info.

thyroiduk.org.uk/tuk/testin...

[Tinatina in reply to shaws]

Thank you for your reply and reassurance I have printed the interpretation of blood tests off and highlighted the high TSH >2 and also the hypothyroidism symptoms check sheet and ticked loads! (I did take this with me last time but doctor wasn't interested I will be more forceful this time )

The other member has kindly given me the levels for free T3 and Free T4 which I will also ask to see.

I will also as you suggested ask for a print out of my blood test and also my preop blood test

Thank you so much this really helps

[Tinatina in reply to shaws]

Hi

Thank you for your message

I have just phoned the surgery and was told all was normal I then asked for a few specifics

TSH 2.9

T4 13.4

T3 4.7

I think these mean I am definitely hypothyroid when linked with all my clinical symptoms ?

I have an appointment at 3.30 any advice would be gratefully received

[shaws in reply to Tinatina]

When you get blood test results, it's helpful (all a new learning experience) to also get the ranges. Labs differ throughout the country and it makes it easier for members to comment.

Ask GP to also check Vitamin B12, Vit D, iron, ferritin and folate.

Take a copy to the doctor of this link:

thyroiduk.org.uk/tuk/testin...

Bearing in mind that many doctors stick to the guidelines, don't know or go along with clinical symptoms and the guidelines say to wait till the TSH is 10 (some kind doctors medicate when around 5).

[Tinatina in reply to shaws]

Hi

Thank you for your message

I have just phoned the surgery and was told all was normal I then asked for a few specifics

TSH 2.9 (pre op 0.9)

T4 13.4 (12-24)

T3 4.7 (4.5-7.5)

although these are ranges another member has told me so I will check the ranges the doctor uses - do they differ and if so why ? its all quite confusing x

I am asking for print outs of my pre op bloods as I think these will be a good comparison

I think these mean I am definitely hypothyroid when linked with all myclinical symptoms ?

I have an appointment at 3.30 any advice would be gratefully received

[Tinatina]

Thank you I have noted all these figures and will go armed with them to the doctor

[shaws in reply to Tinatina]

I agree with Reallyfedup.

[hilary77]

Thank You! so much for that information I had Graves disease, they could not control my thyroid and I had to have a full thyroidectomy. The endo put me on levo & T3 and I felt okay for the first year post operation and my blood tests have been coming back in normal range BUT lately I have started to feel unwell and this explains it. Where can I find the article you refer to?

Thank You! again.

[Tinatina]

Hi I am not sure what NDT is so will look it up thank you for all the advice I am feeling hopefully I might get somewhere now

[Tinatina]

I have an appointment Wednesday with my doctor armed with more information thanks to all the help you lovely people have given me.

I have been reading posts and noted some saying that the initial starting doses of medication is too low.

What should I be expecting from my doctor if he agrees to offer me medication as I have such a low opinion of him after how I have been treated I am worried he might not get this right. It's hard to feel confident in a doctor who ignores my hypothyroid symptoms after I have had a partial thyroidectomy and my cholesterol has risen and my TSH has risen plus I don't know about the other changes that have occurred such as T3 and T4 and iron as theses haven't been discussed.(more details in my initial post)

Got a feeling when I obtain my bloods and post I will get more clinical advice from you lovely people than I will from doctor-hopefully we can point him in the right direction.

One more question if anyone knows the answer my lobe was removed as I had a 6cm nodule which turned out benign. My other lobe has multiple small nodules and will be rescanned in October to see if there have been any changes -'is this significant in how I am feeling or how I need to be medicated?

[Tinatina]

Thank you for the information

[helvella Administrator]

Do we have any evidence that the T2 and T1 content, if any, is of any significance?

By far the largest contribution of T2 in a human comes from deiodination of T3 (and rT3) - the amount that comes from even a healthy thyroid absolutely tiny.

Also, do we have any evidence that the calcitonin content can actually get delivered without being broken down in the gut?

(This is asked because it seems to me important to get these things right and verified. I am not against desiccated thyroid and believe that for some people it is the optimal available medication.)

[Hidden in reply to helvella]

My endocrinologist (who is the creme de la creme of his field...Dr. Nathan Becker) says that T1 and T2 are just precursors to T3.

[helvella Administrator in reply to Hidden]

I think that is most definitely wrong.

What I do not know is whether you have made a typo or two, or Dr Nathan Baker has a very peculiar view of the science.

Would you care to check what you posted and re-post with what you really meant?

[Hidden in reply to helvella]

Dr Becker is on the cutting edge of research at UCSF, has achieved numerous awards such as the Patient's Choice Award, Compassionate Doctor Award, has worked at the Mayo Clinic, has written the forward to a number of books such as Thyroid Power by Richard Shames, is featured on Mary Shomon's list of top thyroid doctors, and people fly from across the country and internationally to be treated by him, including a list of wealthy and celebrity clientele. Maybe you could learn a thing or two - where did you get your medical degree?

[Hidden in reply to Hidden]

And by the way, when I say 'just precursors' I don't mean to say that they are essential, and therefore we should all be on NDT's. Many people ride a roller coaster of hormonal ups and downs from NDT's over a period of time. Some people do great on them. But when I asked him about T1 and T2 he said they are not necessary if you have proper T4 and T3 supplementation. How they function in a normal, healthy thyroid, though, are as precursory hormones.

[helvella Administrator in reply to Hidden]

Perhaps before you start pointing at my lack of medical degree you could point out to everyone reading that you have edited your own post?

When I saw it, and in my alert email, I saw this:

Juju123 wrote:

Feeling hypothyroid after partial thyroidectomy

My endocrinologist (who is the creme de la creme of his field...Dr. Nathan Becker) says that T1 and T3 are just precursors to T3

[My emphasis.]

Perhaps you could look here:

thyroidmanager.org/chapter/...

en.wikipedia.org/wiki/Diiod...

en.wikipedia.org/wiki/Monoi...

Your Dr Becker, if indeed he actually said that T1 and T2 are precursors of T4 and/or T3 shows a woeful lack of appreciation that MIT is not T1 and DIT is not T2.

[Nickinoo1]

I had a hemithyroidectomy in January and felt fabulous for the first 3-4 weeks where things have shot downhill.

Prior to my op and boy did I feel ill I had a TSH in range so no treatment for me. Bloods after a couple of months showed TSH 7 and a few weeks later 9.

Been on Levo for 5 weeks and feel like I did before my op. Cold exhausted, but the big issue for me in try to work through the brain fog/ lack of focus. Not to mention the side affects of permanent headache, nausea, insomnia on top of insomnia I already had.

I hope you get treatment but if not consider the NDT route. I did that before op and felt so much better than I do on levo and had no side effects either. I am giving one more week and going back for another blood test and discussion about either upping levo - does mean upping side effects? - or if GP won't do that possibly levo/NDT combo or dropping levo altogether.

I love my high powered demanding job - I love my crazy busy life. I will find a way to function but it's hard at the moment. They don't tell you that before the op. Not that I regret the op it was essential as I suspect yours was at 6cm - that's big!

Good luck. Xx

[Tinatina in reply to Nickinoo1]

Hi thanks for your message we sound so similar brain fog is awful and I've got a busy life great job and this thyroid thing is so annoying I want to be feeling normal again x

I will research the NDT route where did you get yours from ?

[shaws in reply to Nickinoo1]

Ask if your GP will add T3 to your T4. You might find that very helpful as it doesn't need to be converted.

[greygoose]

Tina, I'm sorry to say this, but your diet isn't healthy. Skimmed milk and low-fat yoghurts really aren't the way to go, and may be contributing to your weight gain.

All that we've ever been told (brain-washed) about fat is wrong. We need that fat! We need cholesterol. The brain is largely made up of cholesterol. And hormones are made from cholesterol. No cholesterol, no hormones, more weigh-gain. Those that eat the most fat lose the most weight, those that have the highest cholesterol live longest. And there's no such thing as good and bad cholesterol, it's all the same. We've been lied to! And our health is suffering because of it.

Also too much exercising may be making you put on weight, too. Because it uses up your T3, and it sounds like you Don't have enough to begin with. We need T3 to lose weight, and maintain our weight.

Exercise also uses up your calories - yes, I know, that's why you do it. But you've also got to forget all you've ever learnt about calories, too. It just doesn't work that way when you're hypo. Besides, if your weight-gain is due to you being hypo, it probably isn't fat, it's mucin, and no amount of exercise is going to change that!

Hugs, Grey

[Tinatina in reply to greygoose]

Does mucin look like cellulite ? When you pinch your skin?

[greygoose in reply to Tinatina]

I Don't know what cellulite looks like, I'm afraid. But cellulite is fat, mucin isn't.

[Tinatina]

Hi sounds like I have lots to learn where do I start? Feeling confused 😔

[greygoose in reply to Tinatina]

Start by getting your B12, vit D, folate, iron and ferritin tested, and correct any deficiencies. If you need any help with that, just ask us. Don't forget to always ask for a print-out of any blood tests you have done, with the ranges.

Then go back in three months for another thyroid test.

In the mean-time, you could get private tests done, if you so wish. Just ask in a new thread and people will tell you how to go about it.

I know it all does sound very confusing at first, but you'll soon get the hang of things. And there'll always be someone here to help you. You're not alone.

[shaws in reply to Tinatina]

Many of us didn't realise when first or finally diagnosed that we'd have to do so much research/questions/reading as the doctors didn't have answers to why we weren't feeling better. Some prescribed anything but an increase in medication and no knowledge or understanding of clinical symptoms by the medical professionals which they have disposed of in the teaching of our medical students in favour of a computer print-out.

[Tinatina]

Thank you I will post my blood tests Wednesday night if the doctor will give me a printout

[Tinatina]

Thank you for your message

I have just phoned the surgery and was told all was normal I then asked for a few specifics

TSH 2.9

T4 13.4

T3 4.7

I think these mean I am definitely hypothyroid when linked with all my clinical symptoms ?

I have an appointment at 3.30 any advice would be gratefully received

[Tinatina]

thank you the doctors make me feel like a hypochondriac, I am having an appointment tomorrow with lots of notes I have made and will insist he listens if I can try not to cry !!

[Tinatina]

You are very kind people who are helping me understand my condition all the doctors have done is remove half my thyroid and left me to suffer with no information or support.

Thank you for being there x