Please help me. I have nowhere to turn and I ne... - Thyroid UK

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Please help me. I have nowhere to turn and I need help.

Liliahdarling
Liliahdarling

Hi, I need help. 3 years I was a perfectly healthy woman or so I thought. I started getting neck pain and went to the doctor. After a minor examination of my neck the GP said I had a huge thyroid. I had no idea what that meant so she sent me for an ultrasound and low and behold I had a 9cm mass and a 2cm nodule. I was sent to a surgeon and told they were going to remove my thyroid in which they did. They found cancer on the back of the thyroid in the healthy skin which was the size of a grain of salt. They called it an accidental finding.

From that day to this my life has literally been a nightmare of sickness, hospital visits and being told I have anxiety and multiple referrals to psychologists. I am perfectly fine mentally it’s physically that is a nightmare. During the operation they accidentally took out all my parathyroids and found 2 of them and shoved them back in. I had calcium problems for 2 years and still need supplements to cope.

I was started out on 150 of Synthroid and for 6 months was in a state of pure hell. Then switched to levothyroxine and made me worse. Constant pain And vision problems, shaking, feeling cold and buzzing in my ears.

Late last year I was sent to this “fabulous” new doctor who put me on 7mg of armor thyroid and kept me on that for 3 months. Yes I said 7mg of armor. My lungs and bowels shut down and my heart was in risk of failure and every time I went to the hospital I would be told it’s in my head. My tsh was over 99 and I had no t3 in my system and my t4 was minimal. At the beginning of 2020 I was rushed to hospital and told I had to go back on levothyroxine and they started me on t3 called cytomel. 150mg of levothyroxine and 5mg of cytomel.

Fastforward 4 months and I’m in constant state of shaking, I feel like my spirit is being pulled out of my body, my whole body hurts/agony and I can’t sleep at all.

My endocrinologist took my blood work and said it’s all normal, I told him but I’m so sick I can’t live like this. He said it’s not his job to make me well but to get my numbers right. In order to “feel” well I should take up yoga or meditation.

Here are my results. I know that I was supposed to wait 12 or more hours after medication to get my blood tests but they said they only had one available opening so my bloodwork was taken 6 hours after my thyroid medications.

Calcium ionized Standard 1.15-1.33 mmol/L. Mine. 1.14mmol/L

Ferritin. Standard 16-232 Mine. 79

Folate. Standard >5.4. Mine 11.0

Vitamin D. Standard 30-100ng/ml. Mine. 36ng/ml

Vitamin B12. Standard 200-1100pg/ml. Mine. 705pg/ml

T3 Free. Standard 2.20-4.10pg/ml. Mine. 5.43pg/ml

T4 Free. Standard 0.58-1.64ng/ml. Mine 1.09pg/ml

TSH. Standard. 0.450-5.330ulu/ml. Mine. 1.178ulu/ml

T3. Standard 0.9-1.8ng/ml. Mine. 1.4ng/ml

T4. Standard 5.5-11.6ug/dL. Mine 11.5 ug/dL

Calcium. Standard 8.6-10.3mg/dL. Mine 9.1mg/dL

Any help would be so appreciated.

Thank you

99 Replies
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So sorry that sounds awful I wish I knew how to help but actually I’m in a bit of a pickle myself.

I’m sending good wishes instead of advice. Best I can do sorry.

Feel better soon x

Thank you so much. You feel better soon too.

Good god. What a horrendous story. I’m so sorry for what you’ve been through and going through.

Fancy the endo saying that; I’m not here to get you well, I’m here to get the numbers right.

Others very helpful people will come along and help you soon. I don’t know the difference between the frees and nons to advise so I’d better not say anything lol.

I wish you well and hope something changes for you soon. X

Thank you so much.

I can tell your vitamin D is very very low and that alone can cause issues nevermind your thyroid problems. I’ve started using the better U spray to increase mine. I believe if you take it as a supplement you should take with the fattiest meal of the day and at least four hours away from thyroid medication.

My goodness! My heart goes out to you. Keep strong. Hopefully the knowledgeable ones will be along soon. Keep in touch with us. Is this the NHS?

I’m currently living in the USA.

Don’t worry about that we won’t hold it against you.

Not everyone can live in Newcastle upon Tyne ...

Stay strong a lot has happened to you in the past few years and unfortunately you’ve not yet found a endo or GP who cares enough to set you away on trialing drugs and treatment that’s right for you. You will find one though ...

Hi sorry to hear that you’re going through so much I’m not as informed as the other people on here re reading results they all seem marvellous.. however I do think you should get you’re cortisol checked I have a adrenal adenoma that’s caused me to have Cushing’s syndrome it seems a lot of it is all linked there’s also a gene MEN1 that’s also linked.. I have acid reflux it caused anxiety panic the list is endless weight gain but not everyone is classic to the pictures they put on google etc..I really hope you haven’t got this but I do urge you to check it out it’s apparently very rare although most of us agree that it’s rarely found you need a good Endo to investigate.. I note you’re in the USA do you have private insurance? And whereabouts in USA are you?..cortisol messes you’re whole body up it’s worth a try don’t be surprised if you do mention it to the doctors that you get looked at as if you’re mad because a lot of them haven’t a clue unfortunately! I wish you well xx

I had my cortisol checked last year and they were very high.

Yes I live in America. Near New York.

Well that’s a big massive factor in you’re problems I suggest you join the many faces of Cushing’s that’s in USA to ask the people on there for advice I’m on there and the people will help you with questions to hopefully help you sort this and put you on the road to better health x

They will also put you in touch with a decent Endo.. I mean if you have private insurance dr Friedman in California is apparently the best re thyroid/ Cushings etc

Hello is that Dr Theodore C Friedman in Los Angeles? Thanks!

Yes it is👍

Thank you am going to check him out he does web appointments now!

That’s ok yes I know he’s doing them he’s apparently brilliant hopefully I might win the lottery tonight to finally get myself sorted but then again can you see those little 🐖 s flying by!😄

Do you think you have high cortisol then?

LOL! I think my cortisol is good but I have thyroid issues I went from over medication to now undermedicated. I read that Dr Friedman is really an ace when it comes to tricky thyroid stuff as well.

I am so sorry you had to go through all that, how awful and traumatizing it must have been for you. Sadly, yours is not the only horror story regarding thyroid surgery and treatment that I have heard. It is, sadly, a very common occurrence because most doctors are ignorant, insensitive, uncaring and unwilling towards thyroid disease sufferers and treating them.

But, yes, as you said...your thyroid test was done too soon after you took thyroid medication. I understand your predicament then and that you had no choice but to take what you could get. Unfortunately, though, it would be hard for us to give you proper advice based on your thyroid results.

However, as others have pointed out, your vitamin D is low and that alone can cause issues and complications. Many of us here supplement with the Vitamin D BetterYou Spray or softgels. You would likely need around 5000 IU per day to increase your vitamin D levels, maybe even more depending on your individual genetic/biological makeup and how well your body absorbs vitamins. As for your Calcium Ionized Standard levels, that may be improved by taking Vitamin D with K2 (BetterYou has an oral spray that includes both vitamins) because vitamin K2 is said to help transfer vitamin D to your bones. *edit (my mistake, greygoose corrected this, it helps transfer the calcium into your bones.)

Your Ferritin is quite low, too, and you might benefit from eating iron rich foods to help raise it (or taking an iron supplement if you can stomach it.) Usually, people try eating a lot of red meats or liver at least once a week to raise their iron levels, because that tends to be the healthiest and safest way to go about it.

Some people feel better with higher B12 levels than yours but yours is still decent.

I want to say that you might have low zinc (as most people with hypothyroidism do) but unless you test for it, you won’t know how much of it you’d need to supplement with. Low zinc can also cause symptoms like yours.

Other more experienced members will be surely be along with more helpful information and pointers.

Thank you for your kind response. I do take vitamin d and B12 and iron. So I don’t know what else to do.

You might be able to get B12 injections. There’s a lady that does Botox and stuff where I live. She also does IV nutrition and B12 shots. I pay £50 to have a shot now and then. It’s not made a difference with me but that doesn’t mean it won’t for you, and you need to aim to get vits optimal.

If you take iron supplements do you take with orange juice to aid absorption? I bit the bullet and orders frozen organic chicken livers and just ate a pack a week. Just fried them and ate them lol. Then I decide life is too short and paid for a iron infusion in London. Again, no benefit but quite honestly I’d try anything and do anything.

The latest thing is trying gluten free.

No I haven’t tried chicken livers or the orange juice. Thank you for your help. On top of all the other things going on I also have digestive issues. I eat a small variety of foods because acid reflux is an issue.

I’ve been really resistant to trying the gluten thing but I don’t know why. It’s the one thing within ones power to try (some things aren’t always possible) so I would start ASAP if you can. I’m five years in to being unwell and I’m only trying it now

cabro2
cabro2
in reply to cazmania7

B12 injections are not indicated. You need to be below range to get injections in the US. I got them for three months and now only need to take daily 2400mg (LiveWise Naturals liquid),

I had some bloodwork in the middle of March. These blood tests were done 24 hours after taking my thyroid meds. These might help.

My TSH was 2.98. Standard is .0450-5.330ulu/ml

My Free T3 was 3.3pg/ml standard is 2.3-4.2pg/ml

My Free T4 was 1.1ng/dL standard is 0.08-1.8ng/dL

Thank you very much.

From these results, it seems you could benefit from increasing your thyroid medication dosage. 5mcg of Cytomel is a minimal dosage, people usually end up on a much higher dosage before they feel optimally medicated (but, of course, they get there over a period of time.) It’s usually advised to increase by 5 mcg every time and see how you feel. You might not need as much levothyroxine when you increase liothyronine (cytomel) and you might eventually find you benefit from more liothyronine than levothyroxine. Everyone is different.

A healthy adult has a TSH near 1 or lower.

Your feelings of “shaking” could be due to adrenal stress/fatigue which results from low or high cortisol levels. Cortisol is best measured via saliva.

*edit: not being able to sleep well is usually due to low or high cortisol levels. It is also advised you balance your cortisol levels before increasing thyroid medication dosage.

i d sack off that Endo.

Hi Liliahdarling, welcome to the forum.

Reading through your post and your replies, I would agree that you are under-medicated. But, let's have a look at that in detail...

I know that I was supposed to wait 12 or more hours after medication to get my blood tests but they said they only had one available opening so my bloodwork was taken 6 hours after my thyroid medications.

So, TSH will not be affected by when you had your last dose. TSH is affected by the time of day. You don't say what time your blood was taken, but if it was six hours after your 'thyroid medications', I'm guessing it was early afternoon? That's the time your TSH is coming up to its lowest level. It's highest before 9 am. So, if your TSH was 1.178 early afternoon, it would have been higher earlier on. Also, I imagine you will have eaten by then, and drunk tea/coffee, which will bring it down further. Impossible to guess how high if would have been, but too high. When taking thyroid hormone replacement, it should come down to 1 or under when tested early morning. And, given that you're taking T3, one would expect it to be close to the bottom of the range or under/suppressed. So, the conclusion has to be that you are under-medicated.

To get a normal circulation blood level of FT4, one should leave a gap of 24 hours between the last dose and the blood draw. So, we really cannot draw any conclusions from that result.

For FT3, it should be a gap of 8 to 12 hours, so 6 hours only fell a little bit short. But, your result was well over the range. So, that is confusing. I don't really think we can draw any conclusions from that result, either.

If it were me, I think I would be insisting on an increase of 5 mcg Cytomel, and wait another six weeks to get a test under the correct conditions. Don't allow yourself to be brow-beaten into having a test at the wrong time of day. It serves no useful purpose - as you've seen. Just tell them you will wait until you can have an early morning test, and then fast over-night, and leave the correct gaps between doses and the blood draw.

As others have said, your vit D is extremely low. Yet you say you are taking vit D. How much are you taking? Are you taking the co-factors, magnesium and vit K2-MK7? Magnesium is necessary to help convert vit D into the form that the body can use. Not much point in taking vit D without magnesium, because you're bound to be deficient in it. The K2-MK7 is necessary because taking vit D increases absorption of calcium from food, and the K2 makes sure that the extra calcium goes into the teeth and bones, and doesn't build up in the soft tissues, causing problems - and, as you're also taking calcium supplements, it's all the more necessary. (K2 does not get the vit D into the bones, it's the calcium it acts on. :) )

As you're taking vit B12, are you also taking a B complex? The Bs all work together and need to be kept balanced by taking a B complex.

Are you taking vit C with your iron to help with absorption? Your ferritin is still very low. You need lots of vit C, anyway, to support your adrenals. They have been under quite a bit of strain since all this began, and need a bit of TLC, I should imagine! Vit C and B vits are two of the ways you can do that.

I can't imagine that it's necessary to go gluten-free, unless you've tested positive for a Coeliac test. It often helps people with autoimmune thyroiditis to go gluten-free, because they are often gluten-sensitive, but autoimmune is not your problem, is it. I would try raising your nutrients before trying gluten-free. You don't want to make too many changes at the same time, because then you won't know what is helping and what isn't.

You say you have acid reflux. Are you taking anything for that? The odds are that you have low stomach acid, as you've been hypo for a while now, rather than high stomach acid. The symptoms are the same. It might be a good idea to try raising your stomach acid level so that you digest better and absorb nutrients and thyroid hormone better. Do you get enough salt in your diet? I know a lot of people think salt is the enemy but it really isn't. And, low salt diets cause low stomach acid. The other two causes of low stomach acid are low thyroid hormones and low B12, and you've had both. So, maybe time to look into your stomach acid. :)

Hi greygoose, thank you for the welcome. When I saw you respond I was very happy as I see that you are well informed in the thyroid area.

Normally I take my thyroid meds in the morning at 6am. I was fasting that day and had the bloods at 12 noon. The only time I could get because all the blood draw places are shut because of carona.

I am taking 5000 units of vitamin D. Yes I am taking magnesium too. No I am not taking vitamin k. Yes to taking vitamin c but not regularly. No to B complex.

I moved to America 4 years ago and my poor stomach has not coped well with the food change. I was diagnosed with gluten sensitivity Without being celiac and limit as much as possible. I eat a pretty normal salt diet, not too extreme.

My endocrinologist has told me he wants to take me off the cytomel and just keep me on levothyroxine. He doesn’t see the need for it at all. I cannot see him giving me 10mg instead of 5mg.

I just want to be well again. I was newly married when my thyroid was removed, I cannot bear the stress and strain this is putting on my precious husband. I went from normal to an invalid in months.

Thank you for your help.

Also my blood sugar was slightly elevated and he wants to put me on metformin even when I was still considered being within the normal range.

OK, but 12 noon is still going to give you a lower TSH than 9am.

I'm not concerned about you not having an extremely salty diet. I'm concerned with you not getting enough. One man's normal is another man's… If you see what I mean. Frankly, I think the word 'normal' ought to be removed from the English language, because it is absolutely meaningless. :) You're adrenals need a decent amount of salt, as well, and they've been through a bit of a battering lately. Does your doctor ever test your sodium levels?

It would be a very good idea to add in the vit K-MK7 - especially as you're taking calcium supplements. If the calcium builds up in the soft tissues, it could lead to kidney stones and other nasty things - including a heart attack. And, you do need that B complex, and to take your vit C regularly. Quite a bit of vit C, because you need it for your adrenals as well as the absorption of iron - and the absorption of other things, too.

A gluten-free diet is of no use unless it is strictly 100%.

Your endo sounds like a dead loss - most of them are! Can you not sack him and find someone better? Honestly, he's never going to make you well because he hasn't a clue! :)

had my sodium level done last week. 140mmol/L. Standard range 136-145mmol/L. I agree with your opinion of the word normal.

My endocrinologist is the third I have tried and a sad to say the best.

It is well known this area is lacking in good endocrinologists.

We don’t eat red meat at all, so I’m thinking that has to change too.

I’m tired of being sick and tired.

The whole world is lacking in good endos, I'm afraid. That's why we hypos have to learn about our own disease. :(

Don’t eat red meat !!! I may get hammered for this but you need good protein and fat PERIOD

The world seems to have gone mad with eating grass ! In my opinion there setting themselves up for a hell of a lot of trouble in the future.

Get some rally good steaks down you. You’ll feel a lot better with that typed of fat in you.

You don’t have to over indulge either one a week is a good thing with liver, sausage, and mash. Good old home cooking.

Isn’t the term “steak” usually referring to red meat (beef)? Unless you are referring to streaks from a different type of meat.

I was referring to her incorporating beef into her diet, that’s what I meant by red meat. It is a good source of iron. I didn’t mean she has to eat it every day or all the time but, unless she likes liver, eating beef a few times a week won’t hurt.

I was referring to eating more than one steak. Lol

You poor darling - glad to see GG has come on board. She once told me about the adrenal cocktail ( thought she meant the alcholic type) but it turned out to be orange juice, salt and a banana 1st thing am - what a help that was for me, perhaps it would be something to add to the mix and see if it too will help. Remember it takes time to get all things balanced but you will get there so make a plan and stick to it, I wrote my agenda down as my foggy and non retentive brain was a big problem for me at the time. I am an oldie and am still chugging along thanks to all the help and advice this forum gave me.

God Bless you dear lady.

Yes, the word “normal” is almost impossible to apply to reality but I suppose the reason people use it is because it’s faster than explaining in detail what they mean by “normal” for them. It is a lazy way to personalize each individual’s needs.

Not even that. How can anyone even know what is normal for them? Doctors just use it to mean 'in-range', and they don't care where it is 'in-range', and we all know how wrong that is!

I'm in the US and have had a very hard time finding proper treatment most doctors ONLY care about keeping blood results in range. I am just curious how did you go about being diagnosed that you are Gluten Sensitive? I believe Gluten has been a big part of my problem / healing. Good luck to you the wonderful folks on this site will be very helpful I've posted several times and they are all caring and knowledgeable!

I paid a massive amount of money to a chiropractor who thought he could heal everything including thyroid issues. He had all these tests run for me. Gluten sensitivity was one of them.

I did the very same thing 2 years ago - massive amounts of money to "functional" chiropractor who found I was gluten sensitive through a $800 stool test - but the markers really did show it so I went gluten free - I just wondered if you had a better method of finding gluten sensitivity. I have been through a horrible 2 years as well - went gluten free and I did need less thyroid med but functional doc ended up giving me a bigger dose of med for 6 months and I have been trying to get through that overmedication - horrible - there were days where I could barely stand up and talk at the same time I was so sick. I am shocked at how many US doctors I have been to do not understand thyroid and ONLY care about the numbers being in range. I have found 2 doctors I work with now who are both very good who look at everything not just the test ranges. I struggle almost every day but have not yet had to quit my job - good luck to you thinking of you from St. Louis Mo.

Thank you so much. I wish you nothing but good health and joy too.

Pay me that amount too and I’ll tell you the moon is made of cheese. I lived and worked in the states some time ago and thought the medical system back then was only money oriented. It wasn’t a very good sign that there was a chase register in front of the receptionist!

It was then I really started to appreciate our NHS

The Gut is the most over-looked organ in the body. When in fact that’s where our profession should start to solve out of sync reading.

My GP said that to me. Lol

'our' profession?

That was a really awful thing for the doctor to say to you...I'm so sorry that you had to hear that; it must have really hurt. I know what it's like to feel 'thrown away' by doctors once your numbers start to look "normal", even if you're still feeling unwell. I really hope that you start to feel better soon x

Liliahdarling
Liliahdarling
in reply to lau99

Thank you so much for your kind reply. I wish I was the only one going through this, it is heartbreaking that right now I am here feeling broken, sick and defeated there are many others suffering too.

For all of those who in the midst of their suffering stood up and fought on.. Thank you.

I was offered counseling by my Endocrinologist because he had overdosed me on PTU. I then walked out of his clinic never to return. Unfortunately this the same story around the world. Thyroid patients are not taken seriously by doctors and are told they have mental health problems. I have "delusional" written on my medical records when I had untreated Graves' disease for over 2 years because my doctor thought it was the menopause. You can read my story on my profile page. Also I would put your own story on your profile page so members can read it. The only way I got myself well was by joining Elaine Moore's site, I think you should join because she will help you like she did me. She had RAI btw.

Here is the link

elaine-moore.com/

I’m wondering why they are not bending over backwards to help you since they made a balls up with your operation? They should be trying every trick in the book to make you at least feel better.

Did you mean to post to the op? I still have my thyroid but I do have a multi-nodular goitre.

I also have no thyroid, i am currently on 75levo/15t3- it took me 3 awful years to find an endocrinologist that would help me then a further 2yrs of dose adjustments and blood tests to find best combo.

I also have probs with gluten. You definitely need to cut out gluten 100% to be well, I'm sure this will help. Just one crumb will affect me for 3 days. By continuing to eat gluten even in small amounts it also affects yr stomach linings ability to absorb vitamins and meds. Depending on damage your stomach may take a while to recover.

(Fyi my coeliac test was negative as the doctor had told me to cut it out for months before testing and I've refused to eat it again to be retested so just diagnosed with gluten intolerance)

Don't give up, keep fighting for yr health xx

Thank you so much

Sorry not much to add as not so knowledgeable, but my heart really goes out to you, and you are newly married as well! I can only imagine how that feels. You must feel emotionally all over the place as well as physically.

**He said it’s not his job to make me well but to get my numbers right. In order to “feel” well I should take up yoga or meditation.**

How bl**** cruel! I have heard some frankly ridiculous things, (some directed to me personally) but that's a new low from a so called medical professional. Your best bet is to learn as much as you can to help yourself and maybe gather information from reputable sources to take with you into the next consultation. Maybe he will listen then.

You definitely should up your iron levels. I too have a sensitive stomach and had been given iron tabs by the Dr which I always gave up taking but due to feeling really rubbish lately I forced myself to strictly take them (3x daily) and it has made a bit of a difference to my energy levels and I look more alive in the face and not so dead. I take ferrous fumerate 210. You can buy it online also. Are you taking selenium? I was told by an endo it was really important to take as well.

Also I suggest you add bone broths and red meat regularly - especially meat which comes from the bonier parts of the animal which contain gelatine. Soothing for the stomach. Oxtail is good. Season, put in a pot on low heat for several hours, after it creates its own water add a bit more and a stock cube. Very nice.

I was told by one endo 'my strict advice is that you eat plenty of fat' I was also told cut down on natural sugars, so grass fed butter and meat and other proteins and less fruit (apples etc), but berries are good.

I sincerely wish you all the best!

Hi Liliahdarling,

Sorry to hear your story and what you've been going through.

As you said you had had all your parathyroids removed I wondered if you or your doctors have considered the impact that thatcan have on your health?

Although two were planted back in they are possibly not working. Do you know if you had any problems with your parathyroids before your throidectomy? It might be worth checking the hypopara website too.

I too had a throidectomy and a bi-lateral neck dissection due to medullary cancer and a parathyroid tumour ( non cancerous) due to MEN2a. As a result all my parathyroids were removed. One was crushed and put back in but did not work. Consequently I will need calcium / D3 for life in addition to Thyroxine. I currently take One Alpha to supplement this. ( My bit D levels are still too low)

I have crashed at times and two years ago suffered terrible Adrenal fatigue through stress. For the past two years I have been trying really hard to increase all my vitamin levels by eating healthily, exercising moderately and trying to live as stress free as possible. My levels are not quite there yet but most of the time I feel much better.

I have recently discovered the hypopara website and feel that maybe the fluctuations I have are more due to the calcium levels in my body changing rather than being hypothyroidism. I am going to try and monitor this.

Maybe have a look and see what you think. Might be worth getting your adrenals checked out too.

Good luck. I hope you begin to feel improvements soon.

Thank you so much. No thyroid issues that I knew of before this. Was healthy and happy. Had blood tests before coming to America and everything was fine. That was 4 years ago.

I have so much to learn.

I had a complete thyroidechtomy in 2018 following the removal of a benign brain tumour 5 months previously. I was given no warning of possible side effects until I joined this site recently. I have no head for figures so can’t help with your blood results, they are all gibberish to me. I was surprised though at how similar the side effects for both conditions sound, depression, anxiety, impulsiveness, all true for me. I find it helps to know others are in similar situation, makes you feel less alone. Good luck with your problems.

Thank you so much. I pray you feel better too.

I had no idea how the thyroid effects everything. Nobody told me that before my thyroidectomy. Or how sick and tired you would be after.

Doctors are so quick to remove them but not so quick to help you after.

I have been lectured by doctors and nurses about moving on and sorting out my stress levels, I don't have stress levels... I'm sick.

Hi Liliah, I'm sorry that you have gone through this, and that you are feeling so unwell. I can't offer great advice, like the other members on here, because although I have been going through my own thyroid hell for around the last 3 years..(hypo/pituitary tumor/Hashi's) I am still very much learning...on this forum...which has literally, for me, been life saving! Thank you to you fabulous people 🥰 What I will say is, I lived in Canada, for years, prior to moving 18 months ago. The first Endo was nice and helpful, and actually prescribed T4 and T3...he moved, and then I saw 2 others (female, neither seemed to know a lot about Thyroid issues, one threatened to take me off of all of my Throid meds!) Anyway, what I am trying to say, in case you don't already know, is that, if you are not happy with any Endo, then ask to see a specific one, after doing your own research, you can get a referral from your GP, if not, consider a private appointment. You do not have to stay with the one who was initially referred.

If the medication you need is expensive in the US consider getting them elsewhere, they may be cheaper for you. Feel free to PM me.

That happened to me in Canada too...they told me to go and have my blood taken after my initial consult, with one of the female docs at the hospital.knowing I had taken T4 and T3, just 3 hours earlier...so I had high results. So, I later requested another set of bloodwork from my GP., so that the incorrect blood results could be ruled out. I agree with another comment, you are possibly not taking enough Thyroid medication.

Ask to see a different Endo (the Endo's comment to you, is disgusting!) and good luck with your Thyroid journey, the only way is up, you have come to the right place, to get info, and, to feel better soon x

Liliahdarling
Liliahdarling
in reply to Lio4

Thank you so much. Yes this site is helping me alot.

I'm sorry to hear about your own illness. I wish this horrible disease would go away. The suffering is real and the medical system all around the world doesn't seem to care.

PS. It didn't get any better, for me, after moving to Spain...I saw an Endo, who again, told me to come off of my T4...zero T3 in Spain! I didn't. Then when he saw me for the second time, after weighing me, he told me that I was fat (he put his arms out, sideways) and he told me that I must eat too much, and to eat less (my hubby, who tends to agree with strangers, over me, actually stuck up for me, confirming that I eat healthily) so he gave me bloodwork for my antibodies. Needless to say, I have not gone back to see him, because of his bedside manner is very much lacking. From this site, posting my results, I have found out that I also have Hashi's, which has been an eye opener and has explained a lot. I will need to find another Endo, eventually, so that I can get a MRI (pituitary tumor) but I am not in a rush. Hopefully, when I eventually move back to the UK, I will see a good knowledgable Endo, but I'm not holding my breath! 🙄🤭

Hello Liliah

Yes, I agree, in that you do have a lot to learn.

I'm with Graves Disease post RAI thyroid ablation and now manage lingering Graves, thyroid eye disease and hypothyroidism.

Apart from this amazing forum I learnt from a couple of books.

Your Thyroid and How To Keep it Healthy written by a doctor who has hypothyroidism.

Barry Durrant - Peatfield writes in an easy to understand way about all things thyroid and though neither of us now have our own thyroids we do need to know all that this little amazing does, and understand how we can compensate accordingly.

My other book is on Graves Disease written by Elaine Moore. This lady now runs the leading website world wide on Graves Disease and has a world wide following, and runs out of the States. Elaine was and is a medical researcher/ technician and was diagnosed for Graves and went through RAI ablation. Finding no help with her continued ill health she wrote a book to help others who might be in a similar situation to herself, Roll on some years and now there is a website, with an open forum, much like here where you can ask questions of Elaine and the community at large.

My thinking is that if nothing else, you will get help, advise and hopefully suggestions as to an endocrinologist in your state/zip code, who understands thyroid.

The thyroid is a major gland and the regulator, the conductor, of your mental, physical, emotional, psychological, and spiritual wellbeing, it is also your engine that controls your inner central heating system and your metabolism.

You have been through a traumatic time and your body needs to time to heal with full thyroid hormone support and am so sorry that you seem to have struck out with endo's treating by numbers and not considering the total of the person sitting before them

Misty4
Misty4
in reply to pennyannie

Hopefully pennyannie you have helped Liliahdarling and me. I had benign brain tumour removed in May 2018 then due to complications and an extended hospital stay, my thyroid removed in September with no explanation of side effects. I don’t know if I have Graves Disease or Hatchimoto or simply wrong medication but I shall certainly look up both of those authors and try to educate myself myself on the symptoms. Liked your comments that thyroid regulates physical, emotional,psychological & spiritual well being. I can relate to all of those, they are also in line with brain tumour side effects. Thank you

pennyannie
pennyannie
in reply to Misty4

Hey there,

I think I replied to your own post a week orso ago and recommended the same book on hypothyroidism.

I suggested Elaine Moore simply because her website is Stateside, where the patient lives, and her following within the States strong . My thinking being there maybe an option to access her website for recommendations of medical professionals within zip code/states who know and understand thyroid health conditions.

Obviously there maybe other Stateside thyroid health websites who offer similar, but am not aware as I live in the uk.

I'm not sure where you live and the link to Elaine Moore maybe irrelevant for you.

Misty4
Misty4
in reply to pennyannie

Oh I also live in the uk but have found her online website. Sorry if I’ve repeated myself it’s a memory thing 🤷‍♀️

pennyannie
pennyannie
in reply to Misty4

No worries.

I can't see the relevance of her website for you, living in the uk, as the website is in the United States and I was only suggesting the use of it to try and access recommendations of medical professionals who know how to treat thyroid for someone living in the States .

The book written by Barry Durrant - Peatfield that I already recommended to you some weeks ago maybe os some help to you. I'm dyslexic and found it relatively easy to follow, even when suffering with severely compromised cognitive function and being undermedicated and on Levothyroxine.

Misty4
Misty4
in reply to pennyannie

Thanks. I am more interested in her book than her site.

pennyannie
pennyannie
in reply to Misty4

Ok then, I found it all a bit too technical for me, especially since I had had RAI and read of all the damage this treatment can cause throughout the whole of one's body.

Batty1
Batty1
in reply to Misty4

Sadly NO DOCTOR tells you what to expect when you lose your thyroid no matter the reason for removal.....the emotional upheaval from lack of proper hormones and Endos/GPs support and the medical community that believes we all feel "great" on T4 only meds and the king of all thyroid test TSH is to be our only test because the rest are useless. Its so annoying!

And what blows my mind is that is the same story the whole world over. This disease is so big, so many people have thyroid issues, why isn’t there more help for those suffering so badly from mismanagement of hormones?.

I’ve been treated so badly by the medical profession all because I had the audacity to be sick. I’ve been told to take antidepressants, been sent to psychiatric assessment and been told there’s nothing wrong with me. I’ve been told I’m overweight and need to have a gastric sleeve to feel better or go on meal replacement programs. Been prescribed metformin even though my blood glucose numbers are in standard range.

They will address everything but the real issue.... sigh!,,

I have no idea why thyroidless people can't get more support from the medical professionals I've spent 3 yrs wonder this very thing.

I lost my thyroid to cancer in 2016 and my first Endo after surgery was a moron and a slob, I fired him after he suggested I drink diet shakes twice a day so my weight gain stops.

I started having fits of rage and depression, so out of character for me and CONSTANT weight gain inspite of exercising through every single joint and muscle pain I had after the surgery.

My second Endo after 3 visits told me (Your unhappy with your healthcare) you should seek a "Support Group" and a psychologist and my TSH was good and he couldn't help me anymore and he would see me in a year.

I realized after what the 2nd Endo said to me....Im now a throwaway patient and my issues are my issues...good luck!

I've been through 7 Endos in 3yrs and had to fight to feel right with every single one and I also had to fight for and ultrasound to make sure I have no recurrence of cancer (I was always considered low risk cancer, Papillary) so the Endos never thought I needed surveillance I pushed and pushed for over a year to get and ultrasound on my neck....they finally did it (begrudgingly) and guess what I'm looking at possible lymph node cancer, right now. Low risk ...sure

Don't sit back find a new Doctor and keep going until you find a doctor that not only looks at your labs but also at you as a human....both are equally as important.

I've gained over 60lbs over the past 3 yrs (gained the most in the first 1.5yrs) and now I'm battling psoriatic arthritis that hitched a ride after my thyroidectomy....it gets better although I have no hopes of ever returning back to my fit, thin Pre-Thyroidectomy self....I would be happy to not be torchure by every step I take.

Please try not to go on metformin - tell docs that you would like to try changing your diet first, or something, anything, to get it at least delayed, & then review again later...

The last thing you need is to add more unnecessary chemicals into the mix, especially as your blood glucose is in range & doesn't need messing with!

I found myself getting very angry on your behalf and sympathise immensely, especially as I, and many others here, have been 'offered' anti-depressants & counselling when we're clearly not actually depressed, only ill & fed up! One thing I would say though, is to do your best to concentrate your limited energy on educating and arming yourself with knowledge so that you know what to ask for and can counter any such stupidity, rather than wasting your energy railing against them. It can be very helpful to have a very short rant, or write down your anger, and then leave it and go and do something more useful instead!

Hugs

Amen. Perfect advice. Yes I work with a lady who was put on metformin it was very hard for her. I don't want to deal with that on top of thyroid issues. Especially when the doctor said I have a 5 percent chance of developing diabetes in 10 years.

I need to focus on me and not dealing with others stupidity. If they are for me and for helping me that's great but if not I'm moving on.

Hello. I am sorry I cannot help you with your medical problems, but just to say, thinking of you, and we are all here for each other, so hopefully someone here will be able to help you. Take care. x Briarhill cat.

Wow Liliahdarling!

I am shocked, traumatised & astounded at the barbarity and the insulting way you have been treated.... Astounded...

My heart goes out to you.

Your journey back to 'wellness' is not an easy one, but you have taken the first step by finding this forum. There are some people on this site that have far, far more experience and greater knowledge than the huge majority of doctors, who have the audacity to call themselves 'doctors!'

These quality people here, have the knowledge and compassion to help you.

Please take heart.

Greygoose is a fountain of knowledge.

I have read every word, every contribution by all those that have answered you and would like to say Thank-you to all.

I too have picked up on a few things...

Without wishing to offend, may I ask where you come from originally, prior to moving to the US?

My particular interest is Nutrition and the Gut Biome?

I myself am part Celtic of Anglo Saxon Origin on one side and Mediterranean on the other. I currently live in the UK but have lived and travelled all over a great deal... This may be a long read!

Rather like a bird that picks up crumbs and seeds, I collect and make a mental notes of all sorts of 'the little things' that go to make a bigger, broader picture of the 'puzzle' that we all struggle with, essentially being 'Un Well'.

We are all different, therefore logically if we accept this, it will also seem reasonable to agree that illness, or 'un wellness' will equally affect us all differently.

From my own personal journey, I feel that the main difference to be found in all of us all, is our GUT BIOME. What we have eaten and what we have been brought up on throughout our lives, even the soil from where we come from, where OUR food has been grown, everything about us, is what WE EAT.

There are are so many little clues and peculiarities that I have noticed over the years that it might surprise you. I will illustrate some of my points but with a few that I think might be of interest.

14 years ago when I was rushed to hospital with a very serious peritonitis which almost killed me...( I had a ruptured appendix, but due to being Hashimotos thyroid, unbeknown to anybody, my temperature was so called 'normal', if anything a bit LOW. There was a huge clue right there! When in fact I was fighting a raging infection with a white blood cell count of 19 to everybody's surprise. Initially I was told or practically dismissed as a hysterical woman because I probably just had a kidney infection!) To cut a long story short I spent 10 days, post operation recovery on a ward and got to know know some of the nurses pretty well. Especially the nighttime crew...

All three of the nighttimeime crew were nurses who had been recruited from southern Spain. I will never forget them for their kind, caring and sensitive approach. We were able to converse openly in Spanish. What I learnt was very interesting though if the truth be told, it did not surprise me. They were amazed at at this disease called diverticulitis. They had never seen it in their career. In fact they were appalled at the volume of people who was so ill with this condition. They were particularly shocked at a man who was only 50 & was in hospital due for surgery to have part of his bowel removed! Where they have been working back home in Spain they had never seen a single case of diverticulitis.

Of course it's all related to diet.

The preference for eating white processed bread in sandwiches particularly, here in the UK, is I think very injurious to all our health, for at least those that do choose to eat it.

Interestingly enough also on the topic of food, the three Spanish nurses, two young women and a young man also admitted that they didn't really on the whole like eating English food because they found didn't suit them.

just this last week I was watching very interesting program by Simon Reeve here in the UK. He was actually reporting upon migrants entering the Mediterranean at one point and in particular he was speaking with a young lad from Nigeria. They were sitting around a table and they were discussing food and the young Nigerian made rather an interesting comment which I picked up on immediately... When when talking about the food they were eating he complained that he simply could not eat the pasta which Simon Reeve commented upon with humour, saying that that would be a problem living in Italy!! The young lad said that every time he ate pasta he had rushed to sit on the toilet.

In both cases the common denominator is: different people, coming from a different land, eating different foods.

I think it can even be more subtle than that and I ask myself whether they may not even be a genetic aspect to nutrition?

My food intolerance is are many; amongst which the worst are gluten and dairy and soya.

When I go abroad and return to the Mediterranean I can drink semi-skimmed milk both in Italy and Spain without any problem, yet I cannot consume any British dairy product including British yoghurts!

I to My EXTREME surprise can even eat Italian dry bread!!!!!

Normally if I inadvertently consume a single particle of gluten I can be ill for up to 6 excruciating weeks here in the UK!!

This has confused me and made me extremely curious.

By complete accident I discovered that very large quantities of soya are fed to British dairy and this is the reason I believe that I cannot consume British dairy because I'm seriously intolerant to Soya! It would seem soya is not fed or at least not such quantity to dairy herds!

Strangely enough this discovery on my part was further highlighted when meeting a complete stranger in a coffee shop who also admitted to experiencing exactly the same thing! She too was unable to consume any British dairy and she was British, but when she went abroad to their property in Spain, she could consume semi-skimmed Spanish milk without any problem whatsoever!!

Another very interesting fact that I also came across by sheer luck was with regard to read manufacture here in the UK. To save on costs of ingredients as well as to increase speed of production, there is a an accelerated yeast process called the "Chorleywood process" which has been developed here in the UK. This speedy process combined with the use of genetically modified grain with a higher gluten content creates bread that rises more quickly, is less expensive to produce and lasts for days! On an economic level it makes sense, but on a health level for those of us who are sensitive or have difficulty with gluten it is definitely not!

Where I'm going with this lengthy exposé, please forgive me, is essentially to say that we are all individually affected by what we eat, combined with what were used to eating, and possibly even what our predecessors and our ancestors were used to eating; it all has a bearing.

My Mediterranean grandparents found 'eating' in general in America rather difficult because they did not enjoy the food on the whole, and and it didn't agree with them. Studies have shown recently that people who migrate to a different land within a very short space of time, have difficulty with their gut biome & indeed experience an altered gut biome and not always for the better.

We've all experienced it even when we've travelled on holiday; we go somewhere we haven't been before and the food may not always suit us.

Our nutrition is everything, as is our Gut Biome.

I would advise without any doubt in my mind that if only as a process of elimination you cut out all all gluten from your diet. The obvious that will contain anything that is flour based, breakfast cereals, biscuits cakes pastries etc... You will need to read labels extremely attentively. You will inevitably make mistakes. It's the hidden things you have to be careful with; sometimes wheat is used as a filler in sausage meat for example.... or you might be tempted to eat this delicious looking crispy gherkins in a jar only to find if you read the label that there is a high possibility that they have been preserved in wheat spirit vinegar therefore you can't eat them.

as I say there are several things you can do to help yourself from a nutritional point of view.

1/ Go totally gluten free.

2/ Brew your own, 'live' Probiotic, water based KEFIR; water based to be on the safe side in case you have dairy issues you are not aware of.

You can research WATER KEFIR on the internet.

3/ Eat plenty of PREBIOTIC matter.

Pickles, and greens, and in particular CHICORY which is very high in INULIN.

PREBIOTICS feed your gut bacteria.

Kefir is a beneficial Probiotic and these bacteria need Probiotic matter in the gut to graze upon in order to live a healthy life within us!

4/ Increase your stomach acid.

This is essential for iron and vitamin B12 absorption that you had adequate levels of acidity.

Acid reflux can also actually be due to having low stomach acid! You can research this on the net. There are scientific abstracts published on this subject.

HOW TO INCREASE...your stomach acid.

I have pretty much worked out and my doctor agrees with me, that I more than likely have also got... Autoimmune Atrophic Gastritis.. Too much information to add her.

I use Organic Apple Cider vinegar, diluted in water, drunk twice or more during the day, always before a meal, always using a straw to protect the teeth enamel... I also rinse my mouth out with water after.

If you can manage to do the 4 things listed above it will help your general situation greatly. Just being able to digest your food will be a blessing and it will help your mood to lift. There is so much you can through food and nutrition to repair yourself.

Our Hormones, our endocrine system is also dependant on our nutritional values. The two cannot be separated from the other, as I have myself experienced. It's all very complex, but every little piece helps to build up a better picture of the puzzle.

Take heart. Proactively empower yourself to take charge of what you eat. Together with the expert advice of members who are as knowledgeable as Greygoose and others who will give you the benefit of their own experience, you can DO A LOT for YOURSELF!

Cast these idiot endo's from your mind and find solace in those that can reach out and help you here. You can do it!

Good luck

And positive thoughts,

Apologies if this has been a very long missive..🙄

Poppy the 🐈

Wow that was impressive....lol.

I always knew the food was my number one enemy. I do not like the food in America and it sure don’t like me. Everything tastes different.

I am Australian. I left the sunniest place on earth to come to a never see sunlight city in New York. I miss the sun.

Well that certainly explains the vitamin D issue.

Dear old Hippocrates over 2,000 years ago realised that "all disease starts in the gut". This bedrock statement still holds true to this day.

Over 80% of our immune system is housed within the gut. The appendix, erroneously long considered to be a vestigial organ, in fact forms a vital part of our immune system Machinery!

Have you possibly had an apendectomy? If you have, all the more reason to follow a healthy Probiotic laden diet. Off the shelf Probiotic tablets are a waste of money. The average time to reach the shelf from creation is upwards of 18 months, so they little creatures will be long since dead, hence useless. You need to brew your own. You will end up making a delicious drink that will be most beneficial to your general health and will even help to combat the dreaded Candida albicans, in other words for thrush. I know because for having brewed it myself over a long period of time, it has even benefited my partner who's toenail fungus is greatly greatly improved!

This is an intuitive longshot, but it's worth a try because I do actually try to do it myself.

Even if I live in the UK I I tried to follow as much as possible a Mediterranean diet; all our cooking is olive oil based, my partner is happy to comply.

Although you say you are Australian, can you trace your roots farther back?

Are you Celtic Irish, Scots, Mediterranean... Greek? Could you try to look at your nutrition/ daily diet from the point of view of your grandparents, your earlier origins?

I say this because one of the worst things specifically for my Mediterranean grandparents when living in the US was all the amount of emulsified sauces that were everywhere. Eating out was always a problem. Some of the things they enjoyed the most was simple foods. The lovely market in the centre of the Old Quarter in New Orleans allowed them to buy fresh vegetables; a big treat for them was to boil small potatoes, along with small little greens, 'topping and tailing' them, and serving them with olive oil, lightly salted, good quality vinegar and a few little cloves of crushed garlic! It's delicious! Then the water the beans and potatoes had been booked in was kept in the fridge. If constipated, a glass, first thing of this juice, taken cold on an empty stomach guaranteed a prompt result! If not the same juice would make a beautiful light soup, just by adding a few extra little herbs and some rice! The flavours are subtle but so tasty ..

So I would suggest, ditching any convenience food, emulsified fats like Thousand Island Dressing, looking at what you can obtain that is fresh, preferably if possible organically grown... Ditching your Tefal coated pans, (that are toxin poison for us), trying a Mediterranean style diet and looking to incorporate a style of food/cooking that your ancestral grandparents would have eaten.

It's worth a try.

Again it's all about taking control and empowering yourself even with little things like eating a beautiful Persian Milk style Pudding if you can do dairy, rather than a gluten and sugar packed jam donut!

In early February out in a fabulous Lebanese restaurant in London, prior to lockdown, I sacrificed myself. I tried this delicious looking Persian Milk pudding...of court it was made with British dairy...so of course I was ill... But the pain was worth it. At least I experienced it. The flavour of rosewater was exquisite! No wonder the Crusaders fell in love with the Orient!!

I looked up the recipe online.

Next time I go abroad I shall make it using Mediterranean milk!!!

I hope anything I have said benefits you. Stay positive. You can do it.

So many positive thoughts,

Best Wishes

Poppy the 🐈🌞

You are totally awesome. I think I could listen to you talk forever.

I don't have alot to do with extended family and I'm the last survivor of my family. My parents and siblings have passed. I know my mums family are Irish descent and my father is English and Dutch.

Also that potato recipe sounds delicious. Buying new cookware asap.

I may not have an olive grove to sit under and think beneath it in the shade like the Ancient Greek philosophers, but I do listen a lot and pick up on what people say...

I read recently that descendants from Holocaust survivors have a greater propensity than not, to suffer with obesity. This would indicate that the terrible starvation, stress and deprivation not to mention the mental anguish these poor people were subjected to has somehow altered the genetic material they passed on... Logic tells me that if parts of our gut biome are also inherited as recent research has revealed, that maybe this too is altered and can be damaged?

We have so much to learn...

Just keep thinking about what you eat, how you prepare it, what you can possibly remove that may be no good for you and try to go 'back to basics' and now that you have said that your ancestry is Celtic Irish & Dutch that can even give you an idea about possible things that you might like to try an experiment with eating ?? It's all a discovery that we all, each individual one can follow! It can be exciting to when we get positive results and feel better for it! That's the best reward!

Stay in touch.

Let me know how you progress.

Poppy x

Wow what an eye opener. I researched cows being fed Soya, it's horrible how it affects them. journalofdairyscience.org/a...

I can't help but wonder if that soya affect comes through in the milk and is helping cuase all this hypothyroidism!

I only drink A2 Milk, so now I have sent a question to them asking if they feed their cows soy as well. If they do, I am not drinking milk anymore!

I think is is MOST definitely a contributory factor to probably many!

I have great faith in The New Scientist as a reporting voice.

And what is going on now, in the middle of this Pandemic, that the government is trying to push through chlorinated chicken and hormone fed beef ???? I despair.... We can't do anything...

It really is disappointing. There are some farms in California that have eggs and chickens that do not get fed corn or soy, but a dozen eggs are $9! Who can afford that!

That does seem exorbitant... But as a child we did feed our chickens both corn and maize...and mash with potato pealings which they loved! Never again have I eaten such incredibly good chicken meat or eggs!

I am not sure why they deem corn "inferior" but now a days its genetically modified, nothing seems to be as it once was :(

I know exactly what you mean about nothing bring what it once was. I think so much is GM now that we don't know the half of it.... And because do much of our food is do adulterated, I am convinced that is why we are all so I'll in so many strange weird ways.. 🙄

I wonder the exact same thing. I want to go back to the old days when food was just food. Nowadays nothing is good for you it seems like. There are days I don't know what to eat with all the messages in my head about how this is bad and that is bad. I really think Money (greed) is the root of all this evil.

Heavens you've totally got the nail plumb on the head!!! Everything IS TOTALLY about money.

There are people right now with their own self interests, profiting from this pandemic, even at government levels around the world, be it in one firm ir another...

Greed is a Poison that seeps its way through people.

I suppose the only way we could have greater control would be to turn our gardens into a vegetable plot with livestock tucked on the side! Having said that, a friend of a friend has had to do exactly that in Canada: because their son who suffers from autism has severe allergic reactions to any vegetables they buy, even the organic ones, they have to grow their own totally free from pesticides, otherwise he is really ill. However it's worrying to think that even the food labelled as 'organic' gives him problems, as that would indicate there is something not right about the organic??!!

I suppose the problem is that there are just too many of us. The pressures to produce food from ever more exhausted and depleted soils; to breed more and more meat, quicker, cheaper and in ever greater volume, frequently justifying worse and worse conditions for both livestock and the conditions of slaughter... All driven by profits and Greed...Ah well...this current Virus seems to be trying to redress the balance perhaps!!!!

🙄

Agreed, I think that is one positive from the virus. I am hoping some things will change, or in my opinion reverse back to some of our basic common sense way of life. How much I wish people would value life and consequences of their actions.

Would we all really starve without pesticide use and healthier ways of raising chickens, piggies and cattle?

I hate to be Debbie Downer, but I think the human race is much smarter than it is acting. And at least C19 is slowing everything down.

I for one am appreciating the slow down. You really can notice how overly hectic life felt before c19 and how today our actions are more thoughtful...slower...I am going to enjoy that while I can :)

Liliahdarling, Do you take Antidepressants or Pain medications? If so what type

No to the antidepressants and minimal pain relief. I have been prescribed many a antidepressant but don’t need or want them.

Have you tried to split your thyroid dose ? I take my thyroid meds twice a day. Did you have thyroidectomy in US or UK?

No need to reply as I see you’ve had an overwhelming response. I just wanted to say I understand. Xxx

Thank you.

There are a couple of groups in the US you may find helpful:

The Hypopara Site

hypopara.org/

And their Facebook group facebook.com/groups/Hypopar...

The Thyroid Cancer support group in the US on Inspire

inspire.com/groups/thyca-th...

Losing the parathyroid glands is a known complication of thyroid surgery and often difficult to avoid by even the best surgeon. It does require having an endocrinologist knowledgable not only in thyroid cancer but in monitoring and treating your parathyroid issues. There are docs in the US can help — if you join the group on Inspire folks there can help sort things out.

Something is not right with your TSH in light of your T4 and T3 levels. Having had cancer identified your TSH should be kept suppressed for a while and your thyroglobulin (Tg) and Tg antibodies monitored. It would get tedious to try to explain all here so hope you will join us on the Inspire group.

Patti in Arizona

PS - According to my friends in Oz, Arizona is a bit like home. Pop down if you have the chance.

Ponies has excellent suggestions for a US resident. Those three websites are extremely helpful. I agree that something is not right with your TSH and free T4/T3. Hope you can find more help over on Inspire.

I lost my thyroid from ablation 10years ago. If I was you I would drop your levo dose to 125 mcg and see if you feel better after4-6 weeks. Some people are very very sensitive to the medication in general and it gives them horrible side effects. If I take more than 88 mcg a day my life falls apart with all of the same symptoms as you. I have to keep my TSH level between 3.00-4.00. If it drops below 3.00 I’m a non functioning mess with absolutely no sleep. It took me almost ten years of finally ignoring the numbers and going by how I feel best. Not everyone feels better with a TSH at 1.00 or below. It would definitely be a great step to take just to see how you feel by decreasing for awhile.

Wow, you been to hell & back. The problem is that you have no thyroid and only 1/2 of your 4 parathyroids. So, your calcium will be out of whack until you supplement it exactly how you need it, which, in the land of the free & home of the brave is very unlikely. You take T4 but Synthroid is just the brand name as is cytomel, the T3, which I see you quit taking, correct? You will be taking it for the rest of your life so you need to make sure you are taking the right one(s) for you. When you're taking brand names just make sure they don't change, esp. the T4, which is very screwy and if you change the brand name or generic you may be getting a different level of the actual ingredients, which can cause headaches, gut pain, etc. If you can ever get the right pills and you feel good on them try not to change the brand name. I have an endo who treats the patient not the symptoms, he listens instead of talking all the time. He is an unusual endo; most are clueless and may even kill some of their patients. Harsh talk, I know but, esp. in this corona virus days people need to be treated as human beings again. Wait a minute, I made a mistake, people actually should be treated as "animals." I say that because animals don't treat each other nearly as bad as human beings do. Ah, I'm getting too pessimistic again, as I age. You can get your right treatment but it will probably take you more and more self-dosing. It took me 30 years. In these times, people are getting a little weary and it will be even harder for you to get your right prescriptions, but as you try, post your problems here and someone will help you figure it out, there are many like yourself, who, unlike most physicians, have only good will towards you. May peace be with you in your search.

Another member directed me to your post. I am in a similar situation. I was fit and healthy before my thyroidectomy for thyroid cancer 7 years ago, but have been disabled ever since. At first I was in bed all day and barely able to move or think. I also found doctors had no interest at all in helping me get any better. I've been self medicating for 4.5 years, I'm nowhere near 100%, but much better than I was, I can now move around the house, take care of myself and do basic things.

I recommend staying on the forum and reading it regularly to familiarise yourself with how to read blood tests, how dosing should happen, etc.

In the first instance you want to see optimal looking thyroid blood tests, and also to correct nutrient deficiencies and get those numbers optimal, too. This stuff is the basics that really doctors should be doing with us, but often don't. Most people will end up feeling fine or close to fine once they do these things (I'm not sure many people get back to 100% of where they were before thyroidectomy, but maybe to 80% which is enough to get most of your life back).

The list can be quite overwhelming to look at at first, particularly if you're very impaired in what you can do and how much you can read. I suggest picking one thing off the list to work on, get comfortable with doing that, and then a fe weeks or months later once you're settled work on the next thing.

I also recommend increasing your rest as much as you can. Its not talked about often on the forum, but I find that many more unpleasant symptoms particularly emotional ones are greatly reduced for me by resting enough. For me it has to be completely lying down not doing anything, if I'm sitting up on the sofa or trying to read or do other activities it doesn't give the full benefits. But any activity that can be cut out of your day or week can give an improvement to some extent. This can be a difficult emotional process, because often were trying to live our old life and to feel like so many activities are essential that really we could do without. There can be a lot of shame about not being able to do things. But we have a serious illness, and I think coming to accept that is very freeing in the end.

Perhaps your poor doctor does not understand what his job really is. Here is a job description: betterteam.com/doctor-job-d...

I like this definition, too: jobhero.com/medical-doctor-...

And here's what the World Federation for Medical Education says: wfme.org/home/projects/role...

Notice that the 3rd bullet reads: "the doctor as manager of health care"

It does not says "the doctor as manager of lab test results."

Perhaps send doctor this link: themuse.com/advice/heres-a-...

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