We agree to disagree.

[Ballito]

Hi again. My doctor had written to a Consultant Endo and asked for advice and guidance about my thyroid. When a reply came back, I was asked to make an appointment again. The letter consisted of seven lines and included the following.. "Patient does have some symptoms that can be seen in hypothyroidism but there is no indication for levothyroxine replacement given her euthyroid biochemistry. Mere presence of multinodular goiter is not an indication for thyroxine replacement." It went on that he hoped I had not been taking any thyroxine containing suppliments or medication bought over the internet or elsewhere when I had the blood tests performed and that I should be reassured that I do not need thyroxine replacement as long as blood results are normal.

I told the dr that I hadn't expected any help and that I would 'sort it' myself. I had previously said how helpful the forum was, and TUK. To be fair, my doctor was very concerned for me, and wanted to know what I would be doing, but I declined to tell her. We had a frank discussion and I was offered more time - in fact any time I wanted to discuss my symptoms more widely, as perhaps they are not thyroid symptoms, but I said I had made my mind up as I needed to try and sort the thyroid problems myself. Dr. was concerned that I was spending a lot of money on private blood tests, and I was offered a NHS pituitary blood test, which I am going for on Friday.

There were plenty of things that we agreed to disagree on, and dr. would like me to keep in touch as she said she still has a responsibility for me. I do think she is very genuine, but her hands are tied. There wasn't any bad feeling, in fact I was quite happy that the endo didn't want to see me, as it has saved me a journey and after Friday I can try and help myself and see what I can achieve where my thyroid is concerned.

Thank you to everyone on this forum who have given me the new found confidence to do what I think is right for me. x

[Nanaedake]

I can see why your doctor is concerned as your results do not indicate a thyroid condition. Have you considered other reasons such as insufficient calcium in your diet? If female and pre or post menopausal this is very important. Low calcium in diet can cause a range of symptoms.

Have you had full liver and kidney function tested and antibodies other than thyroid antibodies? I would ask your doctor to run more tests to get to the bottom of your symptoms.

[Ballito in reply to Nanaedake]

Good morning Nanaedake. I will take your advice on board. I am 74. In 1964 I had my first child and then a miscarriage. Afterwards my hair was falling out and I had various aches and pains. Dr sent me to hospital for a check up which resulted in me drinking the radioactive iodine and having a Geiger counter on me in 1967. I do not know how much or why, as we weren't encouraged to ask questions then. I had another child in 1967. My mum had overactive thyroid and dads mum had adenomatous thyroid. I was always cold, and my symptoms were always the opposite of my mums. On the hospital report it said that they didn't think I had myxedema, but if I start complaining of the cold, then to go back. As it happened, within a short while we moved towns, and then moved to another country in 1968. I was then given thyroxine to take and I felt well. Since coming back to U.K. 30 years ago I have not been on any medication for the thyroid as I have always been told I was o.k. I have a multinodular goiter; high cholesterol; feel the cold as I do not seem to have any inbuilt radiator - dread winter; heavy eyelids; have never had a hot flush, (I was looking forward to them, to feel warm); Diminished sweating; Puffy face; Tinnitus in one ear; rhinitis; my hair is like wire wool, and is very brittle and have some hair loss so I have been wearing a wig for the last 3 years.; skin is very dry; had carpal tunnel op.; constipation; haemorrhoids; had heavy periods so much so that if I had to go out on the first two days I had to be plugged up, padded up and had a babys disposable nappy on; dry eyes; mental sluggishness and memory loss; poor concentration; anxiety. I am not sure if the bruising on my feet and lower legs have anything to do with the thyroid, but it is poor circulation. I don't feel that I am getting anywhere with the medical profession - hence the need to help myself. Sorry for the long post, and thank you for caring.

[Nanaedake in reply to Ballito]

Ok, so I didn't know you had RAI for presumed Graves disease. The antibodies to confirm Graves disease are TSI and TRAB. If you had Graves disease they will still be present. Have you had these tested and can you get a copy of your results? There is more known about thyroid disease now and you could establish the diagnosis with these antibodies tests.

I think getting checked out for pituitary disease is a good call on your doctors part. You may have been incorrectly diagnosed previously. It sounds like you didn't get much help for your problems. If you do have antibodies for Graves disease then you could ask for a DEXA scan to check bone density.

Are you taking any medication that could be causing any side effects?

[Ballito in reply to Nanaedake]

Hello Nanaedake, I don't think I have ever had Graves disease. Why I was given the RAI to drink is a mystery to me, but years ago you just did as you were told. I have had osteoporosis, which is now osteopenia and I make sure I have a DEXA scan every three years, which is what we are allowed. I took an Alendronic acid tab weekly for years until it stuck in my throat and it was only my husbands intervention with the Heimlich maneuver that I didn't have a serious problem. I also took Calcichew tabs but have recently left them off as I take vit C, D spray with K2 spray, vit B complex, codliver oil tabs, evening primrose, Q10, curcumin tabs. When we lived abroad I was on Thyroxine tabs, but cannot remember how much - nor can I remember having to go back for blood tests on a regular basis. Mind you, there has been a lot of water under the bridge since then, and my memory is not what it should be! I appreciate your help.

[Nanaedake in reply to Ballito]

RAI is given for an overactive thyroid caused by Graves disease, sometimes after thyroidectomy for thyroid cancer and it's used in diagnostic tests. Could you find out why you were given radioactive iodine from your health notes? It might set your mind at rest and clarify your thyroid status.

RAIU for thyroid diagnostic purposes

healthline.com/health/radio...

The loss of your hair after giving birth and heavy periods could well have been due to low iron or ferritin levels. It can also cause anxiety and a range of other symptoms. Some of your past symptoms may have been due to low vitamin D or calcium levels since you've now been diagnosed with low bone density. I don't know when you had hemorrhoids and constipation but it can be one of the side effects of Alendronic Acid and sometimes also calcium tablets.

Alendronic Acid may affect your absorption of minerals and hair loss is listed as a potential side effect. Loss of collagen which is related to bone loss may cause changes in your skin.

You need to ensure you get enough calcium from your diet. there is a useful calcium calculator on the Canadian Osteoporosis society website so that you can tot up the quantity of calcium in foods you eat daily.

osteoporosis.ca/bone-health...

You could try exercise designed specifically to prevent bone loss, also shown on the Canadian Osteoprorosis website.

It isn't a good idea to take thyroid hormone if you do not have a deficit. I for one would love not to have to take it daily.

[Ballito in reply to Nanaedake]

Good morning Nanaedake. Thank you for your questions and advice. I would love to know why I had the RAI but it is 50 years ago now. I was given the card which the original dr wrote on for me to go to the hospital, and on the back was a small report from the hospital. I was given it as we were moving district. That's the only reason I remember what the hospital said. However, I cannot seem to find it now, but will have a look in the loft etc. but cannot remember if I have seen it since downsizing home 11 years ago. Not sure where the old records would be kept. My husband wanted some information on an emergency operation he had when 16 (he is 76 now) and when he phoned the hospital they said they only kept his records for 8 years as there was no further action on his op. It seemed a very short time to us, so he didn't get any answers. My heavy periods got worse as I got older, although the pain and cramps were relieved after I had the children. (We have 4). I wouldn't imagine that I was vit D deficient during the years 1968 - 1987 as we lived in a very sunny climate, but once back here, they would probably have deteriorated. I have started making kefir, so hopefully that should be good for Calcium and any stomach problems. I only found out I had osteoporosis when we came back to U.K. and always drank a pint of milk. I also walked miles with the dog on a daily basis. I will certainly look at the websites you have kindly given me, and thank you again for your input which is very much appreciated. All the best to you.

[Hidden]

I totally agree with your thinking the only way I become well again is to ditch the Endo and the Doctor and I now treat myself. A leap of faith for the brave people on this site but it worked for me.

[Ballito in reply to Hidden]

Thank you Bunnyjean. It is good to hear a success story. I do hope that it works for me as well. I will not be happy until I have tried. Best wishes.