GP finally referred me & I may have thyroid cancer

Been hypo for few years (that I know of) but my GP wouldn't refer me to a specialist or endo cos my blood tests were normal after taking Levothyroxine. He was just putting my symptoms down to depression & raising my Fluoxetine dose (which actually made me high & hyper & then I crashed & had serious depression.) He was useless so I stopped going to docs & tried to manage things myself with diet & supplements...but I've been feeling more ill the last year, especially on my periods & had to stop work. I had no choice but to see my GP again (had to wait 2 weeks for appointment) & I demanded to see a specialist. He finally ordered me an ultrasound of my thyroid & they found a 3cm nodule which has divided in the middle, ENT doc says it looks cancerous so made me have a fine needle biopsy, now waiting for results. ENT doc said if it is cancer they would give me radiotherapy but she also said it could be Hashimoto's so would then refer me to an endo. Naturally I'm worried whatever the result will be. I've read radiotherapy can actually cause thyroid cancer & damage vocal cords? Is an ethanol injection a better alternative? If it's hashi's then should I see an endo or an immunologist or both?

I'm so angry with my GP, this thing has been growing in my neck for god knows how long.

Anyone who is being fobbed off by their doctor, demand the proper treatment! NHS docs are under pressure from the government not to refer patients to specialists to save money. If I could turn back time I would write a complaint about my GP, give it to the practice manager & demand a different GP.

27 Replies

  • Limbolass, If the nodule is malignant (95% are benign) the usual procedure is to remove the thyroid gland (thyroidectomy) and, depending on risk factors which take into account the size and type of cancer and age of patient, to follow up with radioactive iodine ablatement (RAI) which involves swallowing a radioactive capsule to kill off any thyroid cells loosened by surgery and remaining in the thyroid bed and 3/4 days hospital quarantine until radioactive levels have dropped to safe levels. Papillary and follicular cancers usually respond well to RAI. Radiotherapy and external beam therapy is reserved for medullar and anaplastic cancers which don't take up iodine and recurrent pap/follicular cancers which haven't responded to RAI.

    Sometimes FNA is inconclusive and may be repeated 3 months later or it may be recommended that a large nodule should be removed to avoid it impacting on nearby organs and then half of the thyroid gland is removed (hemilobectomy). The removed tumour is biopsied and a conclusive benign/malignant determination can be made on the larger sample. If benign, and 95% of nodules are benign, most patients do well with the remaining half thyroid gland producing the required thyroid hormones without need for Levothyroxine. If malignant, and the tumour is >2cm, completion thyroidectomy is usually recommended.

    A camera was put down my throat prior to hemilobectomy and subsequent completion thyroidectomy so the surgeon could see my vocal chords to avoid damaging them. My thyroid surgeon liaised with the oncologist who arranged RAI and the surgeon referred me to the endocrinology team 3 months after RAI and I'm still under their care.

    If you do have Hashimoto's it should go dormant after thyroidectomy as there is no longer a thyroid gland to attack.

    I hope your FNA is benign.

  • Hashimotoes does not go dormant following thyroidectomy. Hashimotoes is an autoimmune disease so even without the thyroid the autoimmune disease remains.

  • Peacefull, There is research saying Hashi goes dormant when there is no thyroid to attack, unlike Graves which can attack other organs, particularly the eyes.

    I've had no Hashi attacks since my completion thyroidectomy in 2012. I have been on suppressive doses but on 3 occasions had to come off meds for 4weeks so TSH could rise >30 and still no attacks.

  • I have never heard of anyone with hashi's having their condition going dormant. I am in a thyroidless group with many people with hashi's. Even after their TT and even with a suppressed TSH they still have to work on reducing their antibody levels which is the crux of the autoimmunity.

  • Peacefull, My thyroglobulin is undetectable and thyroglobulin antibodies <20. These cancer markers show there is no thyroid cell activity so there can't be thyroid peroxidase antibodies either?

  • May I ask what a hashi attack is?

    I've never called my thyroid issue hashimotos as the Dr never did but I believe I had antibodies (the globulin sort) when first diagnosed.

    What are your symptoms? I don't think I have a thyroid left any more due to thyroiditis.

  • Haggisplant, if you have positive thyroid peroxidase &/or thyroglobulin antibodies you have autoimmune thyroid disease also known as thyroiditis or Hashimoto's.

    When the antibodies flare up and attack the thyroid gland it is a Hashi attack or flare and may cause the thyroid to become inflamed and swollen. Levothyroxine can prevent attacks/flares in most people but some will continue to have flares. As the attack kills off thyroid cells they can dump hormone which can make the patient feel hyper and hypo at the same time. Repeated attacks will kill off the thyroid until it atrophies and becomes a small fibrous mass the size of a nut.

  • Thanks, I misunderstood. I think I've experienced that for many years but I assume I've nothing left now!

  • As Peacefulbliss says; your autoimmune system just finds another target. You then need much more wholistic therapy.

  • Winschild, see my reply to Peacefull above.

  • Is this because your thyroid was removed because of cancer? I also have never heard of this being the case.

  • Winschild, I had a hemilobectomy and histology showed Hurthle cell carcinoma. In the 3 months to completion thyroidectomy I was still having Hashi probems but have had none since completion. I had follow up RAI to mop up and destroy any remaining thyroid cells which appears to have been successful as Tg is undetectable and I've had no more Hashi attacks.

    Unfortunately, the research I bookmarked about Hashi dormancy is on a broken tablet and I can't access it.

  • Surely only thyroid antibodies attack thyroid? I'm sure bodies have autoimmune sets of antibodies specific to an area ie coeliac or PA or thyroid. I think you're either programmed to have them or not. They don't swap tissue types.

  • Thyroid antibodies are specialised cells which recognise a certain type of protein but there are other similar proteins to the thyroid - gluten for instance. As peacefulbliss says, most people who lose their thyroid through autoimmune attack have other inflammatory/allergic reactions going on at the same time or later. I can understand that the autoimmune response can stop but I dont think we really understand why this happens, as it seems to have done with Clutter.

  • I have thyroperoxidase antibodiesand lumps in my neck where my thyroid is. My thyroid swelled up a few years ago and the scan said it was enlarged with lymph gland involvement. But in terms of gluten my GP says I don't have gluten sensitivity and I don't have any inflammatory or allergic reactions going on at the same time. So can't be Hashimoto's.

  • I am in a similar situation with a similar size nodule. I have my second biopsy on Wednesday as results came back inconclusive but unable to rule out papillary thyroid cancer as half is different to the other. It is a wait and see game and the result will be what it will be but would want it taken out anyway as the pressure in my neck is awful.

    The treatment is usually 'successful' and Clutter has come through ok so I work on that premise in my head. Actually once you know what you are up against you have parameters to deal with. It's the not knowing that is driving me mad. The fatigue is the thing that is doing me in. I have 'normal' blood results so GP won't treat me.

    I wish you luck and hope you will keep us posted.

  • Bless you I hope your lump is benign. I too have several lumps and swollen lymph nodes that on ultrasound looked benign and thus have been left alone whilst I've been treated with levo. I feel a blockage and really wish they had took a biopsy cos over a year later I can't help but be concerned that they are missing cancer x

  • I had thyroid cancer thirteen years ago and had half my thyroid gland removed and then the other half a couple of months later. The commoner thyroid cancers are VERY slow growing and if it turns out to be, you may have had it for years. Should you go on to have a complete thyroidectomy and possibly RAI try not to worry too much. There is no such thing as a 'good cancer' but as Clutter says the prognosis is very good indeed once you get your medication balanced. Hopefully you won't have to go down that road, but worse case scenario, don't panick, it WILL be ok.

  • Reading all these replies

    and the reassurance / advice given, makes me soooo grateful we have this site. Long may it continue.

  • Thanks for all your comments & info. I'm trying not to panic, I know it could be worse. I just don't have much faith in NHS doctors & wish I could go private. If it wasn't for online communities I wouldn't even know I was hypo. I dread to think of the amount of suffering people out there who have a serious problem but are being fobbed off by their doctor. I wish you all better health xx

  • Limbolass, I'm very satisfied with the NHS care I had for hemi, completion thyroidectomy and RAI. It may have been quicker had I gone private and 'hotel' services would probably have been better, but my surgeon (who also does private work) was excellent and the nurses lovely and caring.

    Thyroid cancers are very slow growing and generally take years to become large enough to detect by feel which is why ultrasound can pick up very small suspicious nodules.

    You may find this American audio/powerpoint presentation on nodules and changing thyCa management interesting. It's 55 minutes long.

  • I went the complaint letter route, but yet another 2 yrs has floated by with no real action from the doctors.

  • Really know how you feel - I was fonned off by doctors for 18 years with a large lump on my throat, when I could not breath they said it was asthma, blood tests showed low TSH so I must be depressed, put on 5 stone so I should eat less and exercise more, all a big fob off. finally managed to get a new doctor in the practice to tear his eyes off the PC screen and look at me he then felt my neck and sent me for scans, and yes it was cancer, so after a total thyroidectomy and RAI treatment I am trying to get the medication right, it was not as bad as I thought and was two years ago now, I did lose my soprano voice and now sing an octave lower, but that is not so bad. Hope your news is good news and it works out well, at least my surgeon listens to me and tries hard to sort the medication out.

  • Who saw this on tv? Endo on Dr. Oz saying most thyroid tumours don't need to be removed? Confusing

    [ Edited by admin to make link work properly. ]

  • limbolass depending on how long it is since you were diagnosed you should still be able to put in a complaint against the gp. i did just that and i was no longer with the practice. ask for a complaints form from the gp and also find out what there complaints policy invovles.

  • Sorry to hear the problems you're having, I'm in a similar situation with my gp. Won't do the test I require and I have now been informed by some of the good people on this site that I probably have Hashimotos, I saved up to go to a private doctor to get the tests done and still he's causing problems because he won't send a referral letter so the other doc can access my records, I'm just waiting till I get the results from the private guy and I'm off to another practice, I was actually sat next to a woman in the waiting room last week who had thyroid cancer due to this docs negligence, good luck to you💝

  • I now have a different GP but treatment is going slowly at hospital & I'm getting sicker. Having breathing problems & can't even go grocery shopping as it knocks me out. GP gave me an asthma inhaler which doesn't help. FNA biopsies coming back as insufficient sample because it is a cyst, they reckon an adenoma but still they are investigating...there seems to be a difference of opinion among the staff. I just want the bloody thing out so I can get on with life. DWP & ATOS are on my back too. Makes me want to jump off a bridge

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