Thyroid UK
89,209 members103,711 posts

I am new here

Hello.

I am of somewhat mature years being 80. I was first diagnoses with thyroid trouble when 32, after I caught Rubella from the children. I was then Hyperactive, and was on tablets for two years or so. Fast forward to my being 57 in 1994, when the goitre I had had from being in my teens got larger and I had it removed at Addenbrookes Hospital in Cambridge. The surgeon left enough of the thyroid gland to keep me well until 2008 when a blood-test showed I was now Hypothyroid and I was put on 50mcg of Thyroxine. Then in the summer of 2012 I felt very unwell and it was found that my thyroxine needed to be put up to 100mcg. Two years later it went up again to 125mcr then last year down to 100mcg again. Currently I don't feel at my best, and frankly am totally confused by all the information on here. I recently had my annual blood test done, and the only information on my thyroid given is that the

TSH was 3 mu/L 0.4-5.5.

I take my thyroxine at night and did not know to skip the one the night before the test.

I was screened for Hashimoto after a struggle on my part and was told I was alright. I got the feeling the Dr was not best pleased with me for asking.

I am very overweight and nothing I do seems to get it off, I sleep badly, and have a dreadful burning sensation in my feet, particularly at night.

I have been borderline diabetic for some years, if I could get the weight off I am sure that would improve, but because of this the Dr tends to point to the diabetes as the cause of my foot problems, I am not convinced.

Quite honestly I am beginning to feel as if no-one listens to me at the Dr's. last summer I went because one of my ankles was very swollen, they did a blood test and it turned out I was anaemic. Before I knew it I was being tested for stomach/bowel cancer, thankfully all negative, this in spite of my not having lost a gram in weight. Nothing was said about the swelling ankle!

Perhaps at my age it would be better if I quietly shuffled off this mortal coil and left them to get on with more important things.

I would like some advice on what the optimum results should be when they test my thyroid. Also if there are any supplements I should be taking.

Thanks for listening/reading.

Margaret

8 Replies
oldestnewest

Margaretindevon Welcome to the forum, unfortunately your story is familiar. Unless we ask, we're not told so this forum is all about learning how to help ourselves.

If you had breakfast before your blood draw, or had it done later than 9am, then that lowers TSH, so we advise when having thyroid tests to fast overnight and have the earliest possible appointment of the morning, along with leaving off Levo, to give the highest possible TSH. The aim of a treated hypo patient generally is for TSH to be 1 or below or wherever it needs to be for FT4 and FT3 to be in the upper part of their respective reference ranges when on Levo. It looks like you could do with an increase but many doctors think that because it falls somewhere within the range then that is perfect! Also, the older we get, the more they like to lower our Levo.

Doctors tend to be slaves to the TSH, but once on thyroid replacement it's irrelevant. It's FT4 and FT3 that are important, FT3 the most important but rarely tested. I think our annual blood tests should include TSH, FT4 and FT3 to give the whole picture, TSH alone isn't enough.

Here is part of an article by Dr Toft, leading endocrinologist and past president of the British Thyroid Association

Dr Toft states in Pulse Magazine, "The appropriate dose of levothyroxine is that which restores euthyroidism and serum TSH to the lower part of the reference range - 0.2-0.5mU/l.

In this case, free thyroxine is likely to be in the upper part of its reference range or even slightly elevated – 18-22pmol/l. Most patients will feel well in that circumstance.

But some need a higher dose of levothyroxine to suppress serum TSH and then the serum-free T4 concentration will be elevated at around 24-28pmol/l.

This 'exogenous subclinical hyperthyroidism' is not dangerous as long as serum T3 is unequivocally normal – that is, serum total around T3 1.7nmol/l (reference range 1.0-2.2nmol/l)."

You can obtain a copy of the article by emailing louise.roberts@thyroiduk.org print it and highlight question 6 to show your doctor then ask for a dose increase.

For thyroid hormone to work, all our vitamins and minerals need to be at optimal levels, not just in range. You could ask your GP to test

Vit D

B12

Folate

Ferritin

Was your anaemia treated? Still on treatment for it? Are you being monitored? What are your levels now?

If your GP can't or wont test for FT3/vitamins and minerals, then you can do a home test (fingerprick or arrange a venous blood draw at extra cost) that tests TSH, FT4, FT3, both types of thyroid antibodies - TPO and TG, plus those important vitamins and minerals. If you do that then you'll have all the information you need.

bluehorizonmedicals.co.uk/t...

medichecks.com/thyroid-func...

I would arrange to have these tests done then come back with the results for members to comment.

2 likes
Reply

The information about how to prepare for tests and the timing of them is because of the following :

TSH

This varies with time of day/night. It is at its highest during the night, but blood tests aren't carried out during the night. So the next best thing is to get tested as early as possible during the day.

Low TSH might lead to someone not getting a diagnosis of hypothyroidism which is justified, or it might get someone refused a justified increase in dose of meds, or it might get someone's dose reduced unnecessarily.

So time of day is vitally important for measuring TSH and getting the highest possible result.

TSH doesn't normally change very quickly from day to day though, so missing a dose in the 24 hours before testing will have little impact on the TSH.

Free T4

Taking Levo in the 24 hours before a test will increase the level of Free T4 in the blood. If TSH is too low for the doctor's liking, and they are considering lowering the dose of Levo, then a high Free T4 may clinch the deal i.e. make them decide to lower the dose of Levo. Since people rarely know which tests will be done in advance it is best to be prepared for any eventuality, and that includes not taking Levo for 24 hours before the test.

Free T3

This is almost never tested for, unless it is arranged by an endocrinologist. T3 doesn't hang around in the blood for very long, therefore if T3 is being taken, 24 hours without a dose of T3 is excessive and will give unrealistically low results. It is advised that people take their last dose of T3 12 hours before the test.

Another reason for testing as I've outlined above is that by sticking to the same rules all the time you can compare results from one test to the next.

Welcome to the forum. :)

4 likes
Reply

For patients aged over 50 years, with or without cardiac disease, clinical response is probably a more acceptable criteria of dosage rather that (sic) serum levels.

medicines.org.uk/emc/medici...

Reply

You have every right to your blood test results, Make sure you get them ,with the ranges ,and post on here for advice, No doubt they think at your age you will not understand or need to know ! As to pre diabetes ,at 71 I became diabetic three months after diagnosis i was not even pre diabetic.

I cut out all the nice cakes and deserts.I went for a low carb higher fat diet .Replaced marg with tastier butter.Unfortunately the supermarkets have screwed the milk producers so much many have stopped dairy farming and there is a shortage of cream and the butter price is rising .

Reply

Further to my original post above, thank you all for your replies. I have now had the results of a private blood test done by Blue Horizon as shown below, with comments by their Doctor.

HAEMATOLOGY

Vitamin B12 * 832 pg/ml 197 - 771

Note amended reference range due to change to

Gen II assay.

Folate (serum) >20.0 ug/L > 2.9

Note new reference range effective 03/04/2017.

If no change in dietary habits, a normal serum

folate makes folate deficiency unlikely.

BIOCHEMISTRY

FERRITIN 26 ug/L 13 - 150

Optimum Ferritin level for females : >27 ug/L

C Reactive protein 3.3 mg/L <5.0

ENDOCRINOLOGY

TOTAL THYROXINE(T4) 99 nmol/L 59 - 154

THYROID STIMULATING HORMONE * 4.85 mIU/L 0.27 - 4.2

FREE THYROXINE 15.2 pmol/l 12.0 - 22.0

FREE T3 3.5 pmol/L 3.1 - 6.8

25 OH Vitamin D 62 nmol/L 50 - 200

Interpretation of results:

Deficient <25 nmol/L

Insufficient 25 - 49 nmol/L

Normal Range 50 - 200 nmol/L

Consider reducing dose >200 nmol/L

IMMUNOLOGY

THYROID ANTIBODIES .

Thyroglobulin Antibody * >4000.0 IU/mL 0-115

Method used for Anti-Tg: Roche Modular

Thyroid Peroxidase Antibodies 19.5 IU/mL 0 - 34

Method used for Anti-TPO: Roche Modular

Doctor’s Comments

________________________________________

The Thyroid Stimulating Hormone (TSH) is elevated. If you are already taking a form of thyroxine, it is possible that that your dose is too low or that you have forgotten to take it on occasion. It may be that an increase in dose is in order - if adjusted it would be sensible to repeat thyroid function (TFT) testing in around 2 months’ time. If you are not taking thyroxine, and this is the first time TSH has been noted to be high, it is possible that 'non-thyroidal illness' or other medication effects are the cause of the elevation. It may be that hypothyroidism (underactive thyroid gland) is about to develop. In these scenarios, it would be advisable to repeat thyroid function tests in 3 months’ time. I would suggest undertaking this repeat test sooner if symptoms develop. The positive thyroid antibody result, however, increases the possibility of your having or ultimately developing autoimmune thyroid disease, such as Hashimoto's thyroiditis or Grave's disease.

The Vitamin B12 level is elevated. This is not likely to represent significant overdose, as B12 is well tolerated by the great majority of people even in very high concentrations (as indeed are most water soluble vitamins). Excess levels are usually a result of supplementation or from following a diet rich in the vitamin. A few exceptions to this rule include those who suffer from a rare hereditary eye complaint known as Leber’s disease. Too much vitamin B12 in these individuals can lead to damage of the optic nerve, which might lead to blindness. Anyone who is allergic to cobalt should also avoid taking vitamin B12 - as the vitamin contains a significant amount of this element. Rarely, high dose supplements or injections of Vitamin B12 cause diarrhoea, itching, blood clotting and allergic reactions. Liver disease and myeloproliferative disease (disorder of the bone marrow) can lead to elevated levels of B12. Some practitioners advocate high doses of Vitamin B12 to help sufferers from Chronic Fatigue Syndrome (CFS) and to combat the development of Alzheimer's disease, amongst other conditions.

I am currently taking:-

Levothyroxine 100m a day taken at night

Folic Acid 5mg x 1 a day (should be 2 but I forget to take the other one regularly)

Adcal-D3 x 1 a day

Vit B12 1000 ug x 1 a day

Turmeric 10,000 mg as 500 mg of extract x 1 a day

Cod Liver Oil 1000 my x 1 a day

Fluoxetine 20mg X 1 a day

Omeprazole 20 mg x 1 a day

Regarding the latter 2, I was on Fluoxetine for years until I weaned myself off early this year. When I went to the Dr because I was not feeling well recently she said it was because I was not taking any and put me back on one tablet a day. They have certainly calmed me down, but whether that was because I needed them or because of my Thyroid I don't know.

As for the Omeprazole well I have had cronic heartburn for the last couple of weeks and they seem to do nothing for it. Maybe I should increase the dose?

I was also taking Natures Best Multi-Max until I ran out a few days ago. I can post the make up of these if needed, they did include 50ug B12

Main symptoms at the moment are swelling and pain in hands, feet and ankles, muscle tenderness, hearing problems, sleeping problems, inability to lose weight and burning feet. A lot of the other symptoms, but these are the worst.

Sorry this is so long but wanted to give as much information as possible.

How much of it can be put down to being 80?

Reply

Hi Margaret

You might get more replies if you copy and paste your latest post into a new post as some folk might miss it. I'm no expert but a fellow sufferer like you...if it were me i would be going to the doctors with my results and demanding an increase in thyroid medication. Good luck and by the way my mum is 75 and is being kept on too low a dose..i keep telling her to demand an increase but she is of the opinion doctor knows best! I cant help but think a slight tweak might make all the difference to her medication. Even at my age of 44 doctors like to tell you you're getting older!!!

Reply

Thank you, I did as you suggested and got some very helpful replies. My generation was taught to look on Doctors with awe, I have to say having changed nappies for a couple it does reduce them to size a bit. Good Lord..... they are human... not Gods!!

Thanks again.

Margaret

2 likes
Reply

i totally agree. I think having this condition has taught me that they cannot and do not know everything..only how to read blood test results as far as we are concerned and as long as they are in range...happy days..the patient must be well!! Hope you get a dose increase and see some improvement.

Reply

You may also like...