Rapidly growing singular 6.7cm nodule getting nowhere fast!

Hormones
1

Desperate for some advice!!!!

I saw (not my usual GP) about 4 years ago as I had a swelling on the side of my neck & was advised that it was probably a swollen gland & that it would disappear. It has not but has gradually got bigger over time. I have been constantly tired, ache all over, always cold, constipated & had counselling for stress & anxiety.

I started having problems swallowing & feels like someone is pressing on my throat so I went back & saw my normal GP. This was September 2014. He immediately suspected that it was my thyroid & referred my to see a consultant, have a blood test & ultrasound. Blood test confirmed that I had an issue with my thyroid but my GP did not want to prescribe until I had seen a consultant. I had an ultra sound & FNA in October but had to wait until Jan 2015 for results. Was told that I had a 4.7cm singular nodule that was indeterminate and a multi nodular goitre. I was told I must have another FNA which was done in February, I had to wait until April for the results. At appointment consultant was on holiday & computer problems so could not give me full details apart from the results were indeterminate again. Registrar that I saw wanted me to have 3rd FNA but I refused & insisted that I wanted it removing as I felt it was getting worse. Agreed to refer me to see a surgeon asap. After almost a month had not heard anything & was told my notes had not been written up as had computer issues & staff shortages. Finally got my letter & it stated that my nodule had increased to just under 7cm. 

Finally saw Endocrinologist 20th May who confirmed that I would need surgery & had short consult with surgeon on the same day who is now arranging for me to have an endoscopy. There does not appear to be any urgency in my treatment. The only comment that I had was that if the nodule is not benign the follow up treatment is extremely good & chances are that it would be benign but could not be 100% curtain. 

I'm a 51year old mum of 2 trying to keep things together & just need some advice from people who have been through similar or who can help. 

Sorry for going on so long 

 

2

Hello Hilary:  I am a Nurse, RN and I live in the USA. Both the Thyroid and Parathyroid work together.  The horomones are  T3 & T4 (thyroxine 3 & 4), when a nodule or lump grows it presses and you may have discomfort and difficulty in swallowing. A doctor can order an Ultrasound or they can feel it sometimes.

I happen to have 3 nodules in my thyroid also and a goiter. They are bengin however they can be cancerous in some people. They sometimes do a biopsy after the ultrasound to see if it has cancer cells in it.

If no cells, they leave it alone. However, if it is causing pain or difficulty with swallowing, they remove it.   Now doing thyroid surgery is a bit dicey since your trachea is right behind the thyroid gland.  It can be removed and then you would need to be on meds to keep a proper thyroid level.

The symptoms you listed in the start of your post are of low thyroid or Hypothyroidism.  Nodules can grow and cause the thyroid to go low.

Becuase it is increasing in size, it should be removed. Most are not cancerous which may make you feel much better.  I know you want it out fast, and since I have no experience with NHS, I can't say how long that could take.  In the USA there is no huge wait.  Can you contact a patient advocate in your health system and maybe they can help you get the surgery sooner? Can the endo push you to the top of the list? Being an American, I am not able to say how NHS works. 

I can only offer my medical knowledge.

Relax, though I know how upsetting it is, most of these nodules do not cause cancer.  I would like you to have it out as I understand your problem with swalloing and airway are paramount! 

I am 54 and have 3 of them and they do not grow, but it is a good idea to anyone who has them, get an ultrasound at least once a year.  I hope I helped you. God Bless, keep us informed on how you are doing.

3

Hi Hilary

I am very sorry that you have had to go through all of this .

I was recently diagnosed with a multinodular goitre it having showed up as an incidental finding on a CTPA scan that was done to exclude/diagnose a pulmonary embolism.

I am now waiting to see an endocrine surgeon.I expect further blood tests, ultra sound scanning of the thyroid itsef plus biopsies.

 

The TSH is 0.17 and low suggesting a sub clinical hyperthyroidism.

I have a lot of signs and symptoms of hypothyroidism having been acutely ill since december 2013 with no answers until now.

.

My signs and ymptoms have included the following.For example always feeling cold.Having to keep the heating all day and all  night except in the sweltering heat of summer.What summer!!

Slow heart rate although initially my heart rate was fast , palpitations, loss of appetite but now this has returned. Headaches, nausea at first.

Severe depression and anxiety, restlessness, feeling completely bored , out of sorts, demotivated to the extreme, feeling unsafe and panic stricken , peripheral neuropathy, burning sensation ib legs, buttocks, down the fronts, sides of legs.

Tingling, numbness, Heaviness of legs,stiffness of muscles, spasms, swollen ankles, throbbing and swollen knees, ankles, feeling of stiffness and tightness, constriction aroiund the ankles.Feeling out of sorts.  poor balance, slow heart rate but now hhis has speeded up with palpitations, lethargy, fatigue,

The TSh is 0.17 and therefore low and I am told  suggestive of a sub clinical hyperthyroidism.

 I am  a novice to all of this and find it quite bewildering.

I was unable to fathom out what was wrong with me but since the scan showed the multi nodular goitre I am able to focus on the possibilities and the future.

I have and still do feel very ill indeed and would not wish this on my worst enemy.

 I suspect that I have fluctuated between hypothyroidism  and hyperthyroidism.

The most distressing issues I have found are the peripheral neuropathy and severe depression and anxiety.

Can I ask you if you managed to get copies of your records and test reports especially those of the nodules?

Hilary are you in a position to appraoch the CG annd ask for an expanation for the delays that you have evountered.

Are you able to approach the CCG with all of this and request an explanation off them to explain why you have been subjected to all of these long delays.

kind regards Jean x

 .

4

Hello Jean, What  is CG?  & What is CCG?   I am glad you can offer Hilary your knowledge and maybe she can  get help from NHS about the delays.

5

Hi Jean & everyone for the replies,

Clinic 3rd Feb -letter sent 4th Feb

The first letter that I got from the Registrar on 3rd Feb gave limited details. 

It says I am clinically euthyroid - right side feels cystic and is enlarged - left side is also enlarged but to a lesser extent. It is non tender & could not feel any cervical lymph nodes. Pemberton sign is negative. Given that there is a solitary thyroid nodule with the ultrasound & FNA being inconclusive & TSH raised at 6 we need to repeat FNA under ultrasound guidance. We will see her again in a couple of months with the results. 

2nd letter Clinic 7th April -letter sent 6th May

Confirmed repeat ultrasound inconclusive. Revealed a 6.8 x 3.1 x 2.1 dominant thyroid nodule that has increased in size since last scan. The aspirated was 4mls of thick dark red fluid returning very few epithelial groups making it insufficient for a cytopathological assessment. Repeat TFTs arranged that day as previously had a picture of sub clinical hypothyroidism. 

Blood test results 

Free Thyroxine. 12 pmol/L

TSH 5.9

Diagnosis: Right sided thyroid nodule

                  Multinodular goitre 

3rd letter - Surgical-Endo Clinic 20th May letter received 28th May 

Compensated euthyroidism 30-09-2014

Events/Investigations

TPO antibody=112 IU/ml 30-09-2014

U/S: Mulitnodular goitre 13-02-2015

Bolia: dominant nodule in the right lobe of thyroid which measures over 6cms in diameter had an FNA done forcytology. Multiple nodules are present throughout the rest of the thyroid gland & the overall appearances are those of a Mulitnodular goitre. 

U/S:R Thyroid nodule =6cm 13-02-2015

U/S:R Thyroid nodule =47x28x20 17-10-2014

FNA:Insufficient sample =Thy 1 17-10-2014

FNA:Insufficient sample =Thy 1 13-02-2015

notes:

Dominant R thyroid nodule - and seems to have enlarged significantly over 6 months. FNA insufficient x 2. Therefore I agree has indication for excision. Introduced to surgeon today in joint clinic. 

First doctors appointment was 16th Sept 2014 approx 37 weeks ago. 

My mum who is in her 80's was diagnosed a few years ago as

1 Primary Hypothyroidism 

2 Mild primary Hyperthyroidism 

When I have mentioned about excessive neck & shoulder pain I have been told that this is not necessarily down to my thyroid but have been given no advice as to what I should do. Do I just wait & see if it gets better once they start treating me. I am not on any meds at the moment. 

I constantly feel so tired, struggle to get myself motivated to do anything, ache all over especially my neck & shoulders, struggle with my weight (when I was in my 20's I was always under weight) constantly feel cold & most nights even in the summer need a hot water bottle to keep warm. I never used to have to use moisturiser but my skin is so dry now. I did have counselling early last year for stress & anxiety but did not find it helpful. 

Difficult to list all symptoms but am sure if there was a check sheet I would probably tick a lot of them.  

Just need to know if 37 weeks to get this far is normal if not who I need to contact to sort this out. I did ask the surgeon how long the waiting is for surgery & he said his waiting list at the moment is 3-4 months but I still have to wait to have the endoscopy done. Could you let me know who the CCG is - hopefully I can start to get some answers. Many thanks again for your reply - just feel like you have been left hanging & not knowing which direction to turn!!!!!

Thoughts to all suffering the same x

 

6

Hello Hilary:  I understand your nodule more.  Since it had fluid in it, it seems more cyst like because cysts can swell up with fluid. They can also be solid and that is worse.  I feel from what you said that it is benign.  Serous fluid (a red cellular fluid) very rarely has cancer cells in it. Also it does run in families, so you may have this as an inherited trait.

The good thing is - it sounds more cyst like and not a hard lump with dense tissue.  So try and be positive since cancer is usually a hard dense lump, and yours sounds like it is not. 

Now as to neck pain and the symptoms you listed,  some of your neck pain is from your cyst. Unless they drain it all, you may feel the pressure on it.  If you can take a Motrin or other pain killer, you may want to ask MD for something stronger like Tylenol with codiene.  You can take a hot bath or get a massage for neck and shoulders. Of course relaxing in your mind would help also. 

You may be goig back and forth it seems between Hyper and Hypo, however the feeling cold, weight gain, tiredness, etc...all goes with Hypothyroid.  Maybe they want to wait on the thyroid meds as your is high.  Normal is 0.34-5.60 and you are over that by a bit.  Once you have this out, you should feel much better.

I have no idea on what CCG is - but do you have anyway to get a hold of a Patient Advocate dept. in your NHS system?   Keep us informed and feel free to ask any questions.  i hope this helps. Shelly

7

Hi Hilary

Thanks for the info.

As I said previously I am a novice where the thyroid is concerned.

I would be interested to know whereabouts you are in the country.

I have a recently diagnosed mulltinodular goitre and can empathise with you.

The CCG is the Clinical Commissioning Group which replaced the Primary Care Trusts in England. 

Did you go to a big hospital with a large edocrinology department?

If you wish you could pm me. I do not know how to do this myself .

best wishes

Jean x

8

Hello ShellyC19

Thanks for your posting. I am a novice where the thyroid gland is concerned. As I keep stating I was recently diagnosed with a multinodular goitre as an incidental finding on a CTPA.

I am at my wits end with the worry. I have to wait until June to see an enndocrine surgeon.

Mty TSH is 0.17.

T4 16.5/

TPA less than 33.

T3 was not done. 

I have felt as if something is pressing down on the left hand side of my neck and I feel marginally breathless at times.

I have osteoporosis and on Monday morning I have an appt to see a consultant.

I have peripheral neuropathy, epilepsy, history of dvt and pe's. I also hVE long qt  syndrome.

I take valsartan, cardicor, ascal D3, Phenytoin 25 mgms bd, clobazam for epilepsy, warfarin, and recently taken codeine for muscular aches, pains, stiffnness, spasms etc.

Hear rate is usually slow but it can rise for a few days at at time.

Do you think I have sub clinical hyperthyroidism?

Kind regards

Jean 

 

9

Hi Shelly

Thanks so much for your reply, I have spent sometime on the internet this afternoon & have found that it is the Clinical Commissioning Group & it is set up for each area in the UK. (Just working out how best to tackle the issues that I have had). 

I must admit I have been taking pain killers when it gets very bad but am loathed to keep taking them all the time. The information you have given is brilliant, just wish I had been given that at the hospital!!!

I'll keep checking in & again can't thank you enough for your support. 

My thoughts are with you too. Hilary :-)

10

SHELLY

CCG stands for Clinical commissioning Groups that replaced the Prinary Care trusts over two years ago.

Shelly can I just say that when I sent a reply to you I made a mistake with one of the blood results.

.

BLOOD RESULTS FROM MAY 4 2015.

My TSH was 0.17.

T4 was 16.5.

TPAO ( Thyroid peroxidase antibodies less than 33.

Do you think I have sub clinical hyperthyroidism?

I have had a very, very bad day re thyroid as I was/am extremely tired, aches and pains in knees, ankles muscles etc. Anxiety and depression overwhelming mme again after two days of starting to improve.Also feeling lightheaded but INR 4.4 on warfarin.

Pressure and heaviness on the lleft side of my neck kicked off again today.

Sorry but really fed up with all this .

Jean x 

 

11

Hilary:  Contact the CCG and as they say "the squeaky wheel gets the grease" and maybe they can move you forward.  If you need a pain killer  take it. As long as it will be temporary - it won't hurt you.

Let us know how you do with it all. Be well, Shelly

12

Hi Jean,

I know exactly what you mean - most of the information I have found has been via the Internet & finding sites like this that I stumbled across last night!!! Wonderful that yourself & Shelly have replied as at times I haven't known which direction to turn. 

I very much feel for you as well & hope your appointments come through soon so hopefully you can start to feel better. I don't know if you have had your biopsy done yet but if not though slightly uncomfortable you do not normally need to have any pain relief & it is over very quickly & you can normally go home after about 10-15 mins. (Daunting prospect I know especially if you are not sure what to expect!!). 

I am in Leicestershire & my first 2 appointments were at the Leicester General Hospital & my last appointment was at the Royal Hospital. Both have got large Endocrine departments but the Royal is the only one where they perform surgery. It would be good to know what part of the country you are in as the level of care does seem to be different depending on what county you are in. I know it shouldn't make a difference but nothing surprises me at the moment. 

Hang in there & if there is anything that I can do to help let me know. 

Hilary :-)

 

13

Hello Jean:

Your TSH is too low and your T4 is too high. So this tells me you are swinging back and forth between Hyper and Hypo Thyroidism.  You have more of the symptoms of  HYPO, than Hyper.  This is common as your Thyroid is being pressed on by the nodules and it is not working right.  Your imbalances are up and then down and it is causing you all of these symptoms and they are awful, I know.

Believe me if a men had this, they would be first in line at the hospital and us gals get this more.  I like to say, they would be growing from stem cells a new thyroid for immediate use.  LOL.

You are not yet on meds for the thyroid and I understand  that.  I know you have to wait until June 12 for your Endo appt.  It will be rough until they get your thyroid fixed and then you can be on the meds and you will feel much better.  Since you have a heart condition they may not want you on LEVO or thyroid meds as it can over stimulate your QT problem.  I think they are worried about that but ask the Endo what he thinks. Your TSH should be higher, at least 0.34.

Keep a log of the symptoms and take it with you to your appt.   Thanks for explaining CCG to me.   XO Shelly

14

Hi Hilary ,Shelly , Barbara and everyone 

Does anyone know what sub clinical hyperthyroidism is please?

I have tried to contact you by PM but as usual it does not work.

IF you could possibly contact ME by PM I can send one back/ I wish to give Hilary the name f the local hospital  but in a private message.

I feel at the end of my tether with this thyroid lark My TSH is 0.17, T4 16.5. TPOA less than 33 . Bloods done on May 4 2015.

Jean x 

 

15

Hi Shelly

This forum has saved what is left of my sanity with all this absolutely horrendous, vicious, harrowing, incomprehensible at times, vile condition aka thyroid disorder.

 

16

Hello Jean:  The words mean Sub Clinical  (Not enough of a condition) to meet with all the symptoms.  I would not worry about the words, your labs show a low TSH, and a high T4.  The Endo will be able to put his diagnosis on it.

For now, you do have an imbalance and seems to be more symptoms of LOW Thyroid than high.  however it is common to be going back and forth, until  it settles down or the nodules are out.  I do not know if we can put an an e-mail address on this website.  I know if you mention some websites it takes the message off/blocked.   however I get your notices via this reply.

17

Dear Jean:  I know, and back when I was diagnosed we had no Internet, LOL.  i was handed a paper folded in half and that was it.  I would have loved this back in my day.  I want to help, and share, as I believe it is good to share what works and what we know.

Thyroid Disease is really crappy and if we help each other it makes it bearable.  Keep in touch. XO Shelly

18

hi Shelly, Hilary, Barbara and everyone

MY message got sent before completion..so .......

This forum has saved what is left of my sanity. I am a retired nurse and can say that I have never come across anything as perplexing,complex and vicious as what I continue to go through with what has turned out to be a thyroid disorder.

Without the help of the dedicated and genuinely lovely, caring and empathic natures and attitudes of the members of this forum I dread to think what would have happened to me.

My husband has spported me but one needs infinite knowledge of this horrendous condition to even  grasp the fundamental issues.

I am now awaiting to see the endocrine surgeon and a physician who have a joint clinic.

I expect to have ultra sound scans and then biopsy of the goitre.

I am going on an appointment to see metabolic bone specialist anytime now as I have osteoporosis.

I appear to have the complications of thyroid disorder then have developed the side effects and complications the investigation of one of them has led to the diagnosis of multinodular goitre. If you follow my drift.

Shelly you are a RN and qyuite rightly expressed what I fear. That is in relation to the meds as they may be contraindicated due to the Long QT syndrome and epilepsy plus being on warfarin.

Do you know of any meds that could be prescribed for either hypo or hyperthyroidism?

Shelly ddo you know the management and treatment of a patient who does  have multinodular goitre plus signs and symptoms of hypoyhyroidism and at other times the signs and symptoms of hyperthyroidism?

I also have a severe vit D deficiency disorder. My PTH was 10 two years ago but nothing was done about it .

Vit D was 69 in December 2014.

The MINIUMUM target range is set at least 75nnomols.

Shelly do you know the treatment and management and prognosis of patients with alternating/fluctuating hypo and hyperthyroidism?

I am really struggling with 5his illness//condition.

Jean x  

19

Thanks Shelly

An endo I saw several years ago about the vit D disorder e mailed me on Friday after I had informed him of my blood results of TSH 0.17. T4 16.5, TPOA less than 33 to say that the TSH is low suggesting a sub clinical hyperthyroidism. He goes on to say that the nodules hyper secrete T3.

Is this correct? I have my reasons for asking because a colleague of his failed to monitor me in 2009.

I know all this sounds vague but as you are a RN you now how drs close ranks.

Kind regards

Jean x

 

20

Dear Jean:  Once a nurse- always a nurse!  

Well thyroid problems are the worst thing I have lived with also.  Like you I have Multi- nodules,except mine are oval and not growing. I had an Ultrasound and it was not painful. So I know your fear.

Like you my husband is supportive.  When I was diagnosed in the 1980's you had to go to a library or hope the doc explained it to you....which they don't.  I knew nobody else who had it, and felt all alone. today we have all of this at our finger tips.

The problem is you have a heart condition and thyroid meds can cause some people to get a faster beat or interfere with another condition. They can give you meds for it but you would need a low dose and have to be monitored for heart changes and your TSH level.

Now, with the nodules causing you an imbalance, they can take out the nodules and see if the thyroid will still be able to function.

If they feel no need to remove the nodules, the usual thing is to replace the low amount of horomone.  If it is more on the Hyper side they can remove the whole gland. Then a person would be on thyroid meds as they have no working thyroid anymore.  it depends hwo the nodules are and their size.  If they are large and pressing or very deep in the gland or just on the surface.  It all depends on how it is and your Ultrasound will show that.

They should do a biopsy as it tells them what the cells are. Some  have dense cells and can be cancerous. They will give you sometimes a relaxant and it does not take long.  It is done all the time and lets you know what you are up against.  Most of us thyroid nodules do not cause cancer.  the only problem is the pain they cause and the pressing on your throat &  swallowing.  So they will remove them when that happens.

The internet has lot's on this subject and some of us know also. When you see the Endo he will know more. Make a list of questions and bring another person with you. Sometimes when you are nervous or scared you may not hear what the doctor said.  Have the other person take notes. My hubby came with me when I saw a specilaist and I was glad to have him there. Sometimes you needan extra set of ears.

I hope this helps. XO Shelly