Hi. Apparently I have hyperthyroidism Saw an endo - who had no medical details so thank goodness I took my private blood results.
He said carbimazole may help but my decision. At least referred to ENT re. my multinodular substernal goitre (one nodule 3.5 cm - and I've had 3 mixed parotid tumours excised + radiotherapy many years ago). Also had another parotid growth on neck removed 18 months ago.
Perhaps I didn't handle this consultation too well. My hand tremor is apparently normal, all other symptoms due to too much thyroid. So nothing much wrong with me and live with it really was the feeling I got.
So grateful to all here for advice previously, but perhaps I'm making too much of my health problems? What to do now,put up and shut up, any answers? j
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Others im sure will comment...put up with it no,!! Is your endo a unsympathetic ass with little thyroud knowlege ...yes!! It is not your fault do not blame yourself, it is their job to provide help...i was not surprised in the least it never went well!! Keep fighting😊
Hey you are not the problem!! Im on endo no3 and all of mine will not get into the discussion about immune diseases, my 1st one told me in a round about fashion that being a mere little lady i should forget about the the techinical things of antibodies and move on....oh boy did he get a back lashing from me and i sacked him. You have to keep fighting to get somewhere, you will find the energy again.
Others will reply and im sure you will be given some great advice on what to do, you will be inspired and fight again...knowledge is power, ☺
Do you have a symathetic partner or male friend you can thyroid educate and take with you to appts? Or a female If not. You need to take someone with you to help advocate for you and who can listen and react less emotionally as they are outside the situation, and not just get in a slanging match. They can report the differences they have seen in you and may help you remove the feeling you are being a hypochondriac - paranoia is a common hyper symptom. It is a sad fact that having a male with you does often alter the way you are perceived and treated even by female doctors who should know better. its not right but if it gets the job done and you treated properly without a constant fight, sacrificing a little ‘pride’ may be worth it.
The answer is as you have done, reported your feelings and dismay at your appointment.
At least many of us have had such similar occasions that you wonder where they got their 'training' as most members know more than most of the medical profession.
That seems extremely odd advice! Are you hyper now? What are your most recent results? If so these MUST be brought down. It is very dangerous to have high thyroid hormones. I would definitely ask to be seen by someone else. Did the endo say antibodies were irrelevant?
Thanks for your response MiniMum, Well the endo said of course I have antibodies since I have a multinodular goitre antibodies would be expected so not relevant - simples
Umm. I don’t know a great deal about goitres but that sounds like rubbish to me. I really would seek a second opinion. The links below may be of interest...
Why didn't he just say something like "Yes, the nodules are caused by antibodies so there's no need to test"
I'm not quite sure if that's true, (still learning - mostly through this forum -) but at least it would show respect for you instead of treating you like you are stupid!
Have you ever been tested for antibodies? It's apparently not so important to test once your problem has been properly diagnosed, but is surely vital for initial diagnosis?
Thank you for replying jnetti. He was polite and gently spoken and not impatient with me at all, though perhaps finding I'd had private bloods influenced his perception of me as a patient?
He asked why I was there, what did I hope to get from this consultation Fair enough but my GP sent me and I hoped to get a diagnosis and hopefully treatment.
From him I understood the reverse was true - the antibodies are caused by the nodules, my body fighting them? I understand so little it's all so complicated isn't it.
I hope the ENT referral will help to check the state of the largest nodule anyway so some way forward I hope.
Swallowing worse, wheeze worse, rough voice and irritated cough I think all due to goitre.
So grateful for all replies to my grumbly post. Loads here much worse than myself. j x
Well hope this makes you giggle. I did say maybe this is all due to my age - I am a 'senior lady' He said, " well if you didn't feel like this when you were 20 then yes it's due to age". So I'm obviously just an elderly hypochondriac x
This is a disgrace. Why do the medical profession think we are all endo botherers? The way some endos go on you’d think there was no need for their existence as no one appears to have a thyroid problem and we are all depressed/hysterical/imagining it/eating too much/lazy. You have had a tough time with several surgeries and a history of thyroid issues. You deserve to be listened to and treated sympathetically. A hand tremor is ‘normal’? I didn’t realise hand tremor also had a normal range that endos measure things by like blood results! Of course it’s not bloody normal - and is especially not normal for you or you wouldn’t have brought it to his attention. What a t**t! Complain to PALs that you were not listened to or treated properly. Don’t give up. Oh it makes me so mad!!! 😡🤬🤮
My son was first told his tremor was anxiety! Eventually they did his TSH and it was zero! I had stood close to him and his whole body was trembling!
He has now been on carbimazole for a few years, he keeps trying to reduce and stop it but symptoms return. He’s reluctant to have his thyroid removed or destroyed because he doesn’t want to end up hypo like me.
I know that some people on here have not had good results with alternative medicine for their thyroid issues, but I know of two people who are my friends with Hyperthyroid issues have. Consult with Homeopath, Naturopath or Hypnosis practitioner. CBD is an up and coming commidity with helping with a lot of health issues too. One of my friends and colleagues is a Hypnotherapist but has written books on Hyperthyroid issues
Thanks for replying Sewnsew. I'm sorry about the problems your son has (and you too). He seems between a rock and a hard place
In fact that is more or less how it was described to me... medicate on and off with carbimazole , as the alternative TT would put me in a permanent hypo state.
Looking back at your posts your bloods dont appear to indicate hyperthyroidism? Is this what you were expecting to be told? Your FT4 is in range though low, Ft3 is in range. Your TSH is low but that’s not a bad thing. You have TPO antibodies so that indicates Hashimotos???? Any thoughts from anyone else on this
Wow, didn't see that!!! I seem to remember someone here saying that, if the diagnosis is in doubt, other antibodies need testing, as TPO (I think it was) can be high with hyperthyroidism too. But if FT4 is low you are obviously NOT hyperthyroid!!!
You have been treated very badly I would complain via PALS and also ask to see another endo. Carbimazole might help 😱he should have put you on it straight away. I get so frustrated with how thyroid issues are treated we have so many different symptoms despite having hyper or hypo. When you can please try and taker up the fight your health is important and the idiot you saw isn't worth the worry. Be kind to yourself you are NOT a . Take care
Re tremor, there is something called "Essential tremor" which is harmless and not a sign of any illness - a friend had it. But if someone is suspected of a thyroid problem that is usually an obvious hyper sign.
FT4 14.900 pmol/L (12.00-22.00) 29% of the way through the range
FT3 5.82 pmol/L (3.10-6.80) 74% of the way through the range
Thyroglobulin abs <10 IU/mL (0.00-115.00)
TPO abs 97.2 IU/mL (0.00-34.00)
Active B12 63.00 pmol/L (37.50-188.00)
25 OH Vit D 50.9 nmol/L (50.00-200.00)
Serum Folate 10.87 ug/L (3.89-26.80)
CRP 1.08 (0.00-5.00)
Ferritin 104 (13.00-150)
I just looked at your last set of private test results which I've copied in above :
You aren't hyperthyroid, according to those results. You are on the way to being hypothyroid, with such low in range Free T4. The fact that your Free T3 is good suggests that your body converts well, and is frantically converting T4 to T3 for all it's worth, but as your Free T4 decreases it will have less and less raw material to make Free T3 from.
Your Active B12 result is far too low. SeasideSusie has posted about low Active B12, and suggests anything lower than 70 is indicative of deficiency, and you should be investigated and treated for it.
Your vitamin D is also far too low, and an optimal level is around 125 nmol/L. There are lots of co-factors required when taking vitamin D. Read SeasideSusie's comments on Vitamin D and co-factors in this post :
Your folate isn't too bad, but is best if you can get it to mid-range or in the upper half of the reference range. Avoid folic acid. The best supplement is methylfolate.
Your CRP is fine.
Your ferritin looks fine, but since your other nutrient results are poor, I suspect your ferritin is artificially good due to inflammation. I wouldn't be surprised if a test of your serum iron showed quite a bit lower in range than your ferritin. If you can improve your other nutrients it may improve inflammation enough that your ferritin will be more reliable. But whatever is the case I would NOT suggest supplementing iron, even if your serum iron did turn out to be low (at least not at the moment). You'd probably end up making your ferritin zoom upwards without improving your serum iron.
Wow, thanks so much humanbean. I have to absorb all you have said but I thought I was doing well on B12 - not so you say? I'm still taking oral B12 (from GP) 1000 mcg, plus Boost B12 spray, plus Igennus Super B complex every day and thought that was all working. I understand - apart from thyroid problems - low B12 could cause a lot of my symptoms.
It is all so confusing but I'm so grateful for your input. x
What kind of B12 are you taking? The best kind to take is methylcobalamin (an active form of B12). I would guess that a doctor would prescribe cyanocobalamin, which needs to be converted to the active form. That's fine if you can convert it, but if you can't it won't do much good.
This is a personal thing, but I keep my B12 levels - both Active and Serum B12- right at the top of the range or even over it.
I think the B Complex you take is a good one that is often mentioned on the forum, so that is fine.
The spray is methylcobalamin as is the Igennus - both from recommendations on here humanbean. Perhaps a good idea to increase my dosage then from your comments. Thank you very much.
Nothing wrong with you?! Search out another Endo! If it were me, I would first find a naturalpath, make an appointment and go discuss this with him/her. A natural thinking doctor is still going to send you for blood tests and probably more to find what is triggering the Hyperthyroidism. Naturalpaths cannot prescribe pharmaceuticals at least here in the US but they can guide you toward a more natural thinking Endo or integrative Dr. I never heard of such a thing that your Dr. told you!
I have had Graves for over 10 years now. Avoided docs for years. Then had a rage. It scared my family and humiliated me. I already had a relationship with a naturalpath. We contacted an integrative Dr. I had been to in the past. He prescribed LDN. My next blood tests showed improvements. The naturalpath then guided me towards a kindhearted Endo, I trusted him, he prescribed Tapazole. It took me months to be able to swallow that drug because of my fear of pharmaceuticals but I finally did. My numbers improved faster. But I cannot get up to the amount the Endo wants me to take because the drug causes me heart palpitations with any amount more than 5 mgs at a time. I just had another thyroid panel. I’m waiting on the results. The way I am feeling I’m sure the numbers are going to be more towards normal.
Take control of your health. Research until you are sick of it and people call you a know-it-all. Don’t be afraid to change docs. It is your body.
I think it is more likely to be a "wrong" TSH result,as that your thyroid hormoens show the beginning of hypo, not hyper. Were you still taking your B vitamins up to the time of the blood test?
Because you had radiotherapy years ago you should have an ultrasound and fine needle biopsy, You may need surgery. I had surgery on my thyroid 3 times in my life, twicce on one lobe and most recently had the rest of the gland removed.
I had that done because the biopsy on the nodule, much smaller than yours, could not be properly penetrated to get enough cells to evaluate at either of 2 leading American hospitals.
Therefore the remainder of the gland was removed in September. The original nodule was benign, but I had two spots of micro Papillary cancer, .6cm each.
No further treatment was necessary except for replacement levothyroxine, and I feel fine.
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Saw an endo - who had no medical details so thank goodness I took my private blood results.
x
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