What to do next..??: Went to see a new endo on... - Thyroid UK

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What to do next..??

Nikkimoz profile image
7 Replies

Went to see a new endo on Wednesday about a lump in my neck I found last July..saw gp twice before I was referred. Anyhow the endo had a feel and said its not a lump your thyroid is enlarged which is normal with under active thyroid. Sending me for an ultrasound "just in case there is anything sinister " but discharged me anyway as he said its nothing to worry about. Asked how I felt..I only managed to say I was exhausted all the time didn't manage to elaborate on anything else. So he is recommending my gp test me for obstructive sleep apnoea as when he asked me if I snore I said my husband says I do! But only when I'm very tired or had a drink! So do I just live with this lump in my neck?? Didn't think it was worth me going into the whole "I don't think levo is enough for me I have too many symptoms " saga as he discharged me straight away. The problem is I don't like pushing my self and symptoms onto Drs as I feel I'm wastin their time and should actually just "go away and lose weight" as I have been told frequently before. Can't get my head around all the blood tests and levels of this, that and the other. Feeling miffed and a bit at the end of my tether 😩

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Nikkimoz
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cjrsquared profile image
cjrsquared

I know it is hard, but truthfully if you want to get well you will have to take responsibility for your own health. The reality is that most gp's and many endocrinologists support the view that levothyroxine is the complete answer and are unwilling to accept that between 10 and 20 percent of patients on this therapy continue to complain of symptoms. They have been trained to focus only on blood tests and not taught about clinical symptoms. I agree it is not fair or right but we have to accept what is. The positive is that there are many experienced and knowledgeable people on this forum whom are willing to share their expertise. I encourage you to take charge of your own fate, get your own blood results and post them with a summary of your symptoms and hopefully someone will respond.

I will you well, good luck.

radd profile image
radd

Nikkimoz,

You are not wasting a doctors time. They should be looking after you and investigating why you are feeing so unwell. You were under-medicated a year ago.

An enlarged thyroid gland is usually caused by a thyroid hormone imbalance and the gland struggling to produce more. You sound systematic so are probably either still under-medicated or your meds aren't working.

Your ultra sound scan will identify any problems and if further investigation is deemed necessary you may be offered a fine needle aspiration (FNA) to check the health of cells but cancer in nodules is rare.

Exhaustion and sleep problems are classic of low thyroid hormones. Have you had a thyroid function blood test recently? If so, post results complete with ranges (numbers in brackets) for members to comment.

You could also ask your GP to test Vit B12, Vit D, folate and ferritin as these are commonly found to be deficient in people with low thyroid hormone and are required for good thyroid hormone synthesis. Again post results for members to comment.

When thyroid hormones (& nutrients) are optimal, we function and feel so much better.

serenfach profile image
serenfach

Hi Nikkimoz - you have not actually said you have had a diagnosis or are taking anything so I am presuming you are not.

The lump on your thyroid is called a goitre, and the GP should have known this and known that it means the thyroid is struggling, and done some blood tests. The constant tiredness is another symptom which should not be ignored as it can get dangerous. I used to say I could sleep on a clothes line and am sure I slept standing in a queue at times.

Go back to your GP and demand thyroid tests and then post the results on here and we can all help you further to get back your life. I have found this site so valuable, and am now much better since I took my health back into my hands.

The good news is if you are diagnosed and put on the right drugs, the goitres usually go. The GP is there to make you well so you are not wasting their time. You are ill, so go and see him/her and make sure they know you want some answers. Keep us posted, we are here for you. Everyone here has helped me so much they will never know the change their help and advice has had on me, so join me in getting better!

Nikkimoz profile image
Nikkimoz in reply to serenfach

Hi thanks for the reply sorry for the vague background was just in rant mode! I have been diagnosed as under active thyroid in 2002. Currently on 150 mcg thyroxine. Had a parathyroidectomy in 2012. Take metoprolol, ramipril, doxasosin, dosulepin aswell as the levo. Was on iron and folate as when I once asked gp to check more levels these were low so he prescribed those. Another dr took me off those as he said my levels were now ok. Plus was advised to stop taking my water tablet which I was on for swollen legs and feet. Iron is always low as I have alpha thalassaemia trait. Once I get last weeks blood results I will post them on here for interpretation. I do think I should try and self medicate with t3 or something but unsure where to start or where to source from. No faith in gps anymore really.

radd profile image
radd in reply to Nikkimoz

Nikkimoz ,

High BP, depression and water retention are classic symptoms of low thyroid hormone.

What a pain about the alpha thalassaemia trait as you need iron for good thyroid hormone synthesis. The body needs iron for carrying oxygen throughout the body and to assist in digestion (enzymes). When iron levels are low it slows down the conversion of T4 to T3 (deiodinase activity) as requires iron containing enzyme thyroid peroxidase to produce the thyroid hormones.

Members have found Ferrous Fumarate beneficial when taken with 500mg-1,000mg vitamin C to aid absorption and minimise constipation, or Apple Cider Vinegar. Thyroid meds can bind to certain types of iron supplements so space four hours apart. I have iron overload so the opposite problem to you..

Have you been diagnosed with thyroid antibodies ? ? ..

Nikkimoz profile image
Nikkimoz in reply to radd

Radd, not that I know of. Tried with several gps to explain about all the symptoms I have being due to poor thyroid medication but always fail as levels are said to be "normal". Feel at odds confronting them when I'm not actually sure wot I should be asking for them to test. I usually get the old " you will feel better if you lose weight. Have u tried weight watchers?" 😩😆 as for the alpha thalassaemia one gp said taking iron won't make a bit of difference whilst another said take it to keep topped up then the last one said stop as you are high in iron ?!?!?

radd profile image
radd in reply to Nikkimoz

Nikkimoz,

I don't know a lot about alpha thalassaemia ... just that it can involve low iron.

Weight gain is a classic symptom of under medication or thyroid meds not working properly due to deficiencies. As advised above thyroid meds (for many) will only work with optimal levels of Vit B12, Vit D, folate and ferritin.

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