Unsure what to say to my endocrinologist.

[jmd1157]

I'm a 55 year female.

Background - Follicular Thyroid carcinoma diagnosed in 1994.

Partial Thyroidectomy April 1994.

Eradication of remaining Thyroid by high dose radioactive iodine July 1994

Medication - First year was taken up adjusting my medication and tests.

1995 to 2011 250-300 mcg Levothyroxine

2010 to date gradually reduced to 150 mcg.

I need a suppressed TSH due to the FTC

Symptoms - Aching joints.

Excessive tiredness - if I sit and I'm not doing physically doing anything I fall asleep.

Depression - something I've never suffered with before.

Swollen hands and ankles.

Disturbed sleep.

Irritability - again something I've never had before.

Struggle constantly with my weight and even though I have become vegan and I'm very careful what I eat, I'm still overweight.

Hair loss - bald patched on legs and pubic hair, thinning and very course hair on head.

Test results (taken at a different hospital to normal)- 16/07/12 200 mcg Livothyroxine.

Weight 76.8 kg

FT4 30.1 (11 - 22.6)

FT3 6.8 (3.5 - 6.5)

Suppressed TSH

Test results - 175 mcg Livothyroxine.

Weight 76.5 kg (Strict Vegan diet, with vitamin and mineral supplimants)

FT4 28.5 (11 - 24)

FT3 6.3 (3.5 - 6.5)

TSH suppressed

Weight now due to diet - 71 kg taking 150mcg Levothyroxine

My original consultant's (ENT & Cookridge Cancer hospital Dr.) specified that I needed to keep my Levothyroxine above 200 mcg at all times and was happy for me to adjust this up to 300 mcg as and when I felt the need.

After moving to a different area my GP referred me to an Endocrinology specialist who feels I was over medicated as the 'thinking has changed' over the years. This has seen my meds. reduce from 300 to 150mcg. The only blood tests I have is Free T4. Free T3. TSH Through Endocrinology.

I'm also due to have a TSH. T4. Thyroglobulin and TG Antibodies blood test through a Thyroid cancer nurse who will do a telephone consultation when she gets the results. This will be my second such test and all I got last time was that she agreed with my Endo that I was over medicated.

Should I carry on as I am or ask to have my meds. and blood test changed?

[PinkNinja]

I'm sorry you are having such a hard time with this.

How did you feel when you were on the higher dose? Does your endocrinologist not know that blood tests only tell you what is in your blood and nothing about what is in your cells? It might be that you need such high doses for the thyroxine to get into your cells and be used.

If I were having such severe symptoms and my doctor was convinced I was still over-medicated, I would be wanting tests for iron, ferritin, B12, folate and vitamin D to start with. I would also want a thorough investigation into adrenal insufficiency. It is believed that all of these can affect how well the cells in your body can use thyroid hormones. It could be that low levels of any of these are reducing your cells' ability to use thyroxine, resulting in high levels in your blood but a low metabolic rate.

Some of your symptoms also sound like they could be attributed to low iron, low ferritin and/or low B12. You really want your B12 to be above 500 (even though the NHS says 200). You may find that once these are sorted out (if they are indeed the problem) that you are then able to use the thyroxine more effectively so that your blood levels come down but more is getting to the cells making you feel much better.

I'm not a doctor though, so these are only suggestions. If you don't get any luck with the above, are you in a position to see a private endocrinologist? If so, Louise Warville at Thyroid UK can provide you with a list of sympathetic thyroid doctors if you go to this link

thyroiduk.org.uk/tuk/forms/...

I really hope you get the treatment you need soon so you can start feeling better.

Carolyn x

[jmd1157]

Thank you Carolyne.

I plan to make a list for my next visit, so will put your suggestions on it.

My iron was low a couple of years ago and I had to have colonoscopy and gastroscopy tests which didn't show any internal bleeding. I was put on a three month course of Folic acid. My next blood test came back as ok.

I didn't feel too bad on 300 mcg, but was gaining weight, getting very tired and ached. I also forgot to say my memory is now atrocious and has been for the last few years. My poor family is sick and fed up of me asking the same questions over and over again as I quickly forget what they have said,

I must admit I have never felt 'normal' since losing my thyroid, but thought that was just how life would be from then on. It's during the last 5 years or so, I feel I've gone down hill. My endo. puts everything down to over medicated and the menopause, which started and finished by the time I was forty five.

Unfortunately, I'm not in a position to see a private endocrinologist.

Many thanks,

Jean x

[PinkNinja in reply to jmd1157]

I highly recommend getting your vitamin B12 tested. Like me, you were given folic acid without B12. Folic acid without adequate B12 can cause all sorts of problems including the memory problems you describe. I take 5000mcg B12 in the form of methylcobalamin as I know my level is too low. Many people recommend 1000mcg as a maintenance dose even if you are not deficient.

Low vitamin B12 could account for a lot of your symptoms, especially as you were given folic acid (it can mask a B12 deficiency). There is no problem with taking folic acid, and I'm sure it helped, but it needs to be balanced with high enough doses of B12. Low B12 can cause anaemia.

There have been a couple of posts over the weekend with videos about B12 deficiency. You may want to have a look and see if any of the symptoms are similar.

I hope you find a solution soon so you can be well again.

Carolyn x

[jmd1157]

Thank you, I'll check them out.