Hypothyroidism: Hello, In 1978 I was referred to... - Thyroid UK

Thyroid UK

120,951 members140,907 posts



In 1978 I was referred to a London hospital with galactorrhea, despite my children being grown up. I was told that the pituitary gland was the problem which though presented with a lactation issue, was due to my thyroid gland not working . Since then, I have been taking synthetic thyroxine, namely 200mcg once daily. My bloods have always shown that I am overactive but, I do not have any symptoms showing that, only symptoms associated with an underactive thyroid, namely weight gain, coldness, hair loss, dry skin, tiredness etc. In the past, the GP I saw looked at me as a person and my outward presenting bodily signs which showed I was grossly underactive despite what the bloods told him. I have a new GP who after 40 years wants to reduce my thyroxine tablets because my bloods say I am overactive despite the fact I have no symptoms to support the blood findings! For years, it has felt as if the tablets just don't work because of the continued hypothyroid problems I have. My new GP is adamant that I have to reduce my dosage! Now I'm worried what is going to happen when the blood levels drop to what she deems as 'normal' and my hypothyroid symptoms get even worse! It's as if she cannot see the bigger picture and is only concerned with my blood levels. Outwardly, I have no overactive thyroid signs at all, only underactive ones! Does anyone know of a specialist who could investigate this problem as to why the tablets say they are working too well and yet don't seem to be working at all? It is just as if I am not absorbing what is in my bloodstream. Has anyone else had this problem and if so, what did you do. Thanks for taking the time to read this.

12 Replies

200mcg is a reasonably high dose of thyroxine unless you are very large or have no thyroid tissue. It seems likely you are not absorbing the Levothyroxine. Ask your doctor to rule out coexisting autoimmune disease such as coeliac disease and get all thyroid antibodies and vitamins tested. For full thyroid evaluation, follow SlowDragon 's advice.

GPs are not trained to understand or recognize secondary/central hypo, which is what you have. The guidelines for it say that TSH should not be taken into consideration. Demand an endo referral as only an endo can deal with secondary/central hypo.

SlowDragon profile image

Absolutely essential to get full Thyroid and vitamin testing

Malabsorption due to poor gut function and low vitamins are extremely common

For full Thyroid evaluation you need TSH, FT4, FT3 plus TPO and TG thyroid antibodies and also very important to test vitamin D, folate, ferritin and B12

Just testing TSH or TSH and FT4 is completely inadequate

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies Or vitamins


Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have money off offers.

All thyroid tests should ideally be done as early as possible in morning and fasting. When on Levothyroxine, take last dose 24 hours prior to test, and take next dose straight after test. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

Come back with new post once you have results and ranges BEFORE reducing your dose

Your new GP is likely only looking at TSH

in reply to SlowDragon

Thank you all for the information. Interestingly, I was on thyroid vitamins until 4 months ago when the GP decided to stop them telling me that I can buy them over the counter. Unfortunately, I cannot seem to find the blend of vitamins for just the thyroid without having to take a load of others and, they don't seem to be in the right dosage either. I think it was to do with surgery cut backs! Anyway, I'm just taking a vitamin B complex in the hope that these will suffice.

greygoose profile image
greygoose in reply to

There are no thyroid vitamins. Manufacturers that produce these collections of nutrients in one pill are taking advantage of people's gullibility and desire for good health. Sorry, not saying you're gullible, but you know what I mean. We obviously need optimal nutrients for good health, but more is not better. So, we need to find out what we need and supplement accordingly. Besides, the amounts you get in these multis is not enough to cure a deficiency.

You need your vit D, vit B12, folate and ferritin tested first, and then take it from there. With our help, of course. Your doctor won't know anything about it.

You can get a private test with blood from a finger prick. You don't have to take a syringe full. :)

in reply to greygoose

These vitamins were prescribed by the GP in a high dose a few years ago. I didn't ask for them, they were just prescribed after I'd had some bloods done. The new GP stopped them because she felt I could buy them over the counter, which is what I am now doing but I cannot get them in the mega dosages I was on. My bloods were not checked to see whether my levels were ok or not. Stopping them was based on GP economy. I'm really interested in getting some private bloods done, especially now i know it is from a finger prick!!!! Thanks for that.

greygoose profile image
greygoose in reply to

Yes, I understand all that. But, just because your doctor prescribed them, doesn't mean they were a good thing to take. Doctors know nothing about nutrition, I'm afraid. :)

in reply to SlowDragon

I've just had a look at the private thyroid testing companies that you suggest and it looks very comprehensive. They say that they will send a blood collection kit ... will I have to take a syringe full of blood by myself? I'm not sure I could do that, or is there a much simpler way like a finger prick? Sorry to be so dim, but I'd hate to send for a kit and then find out that I had to use a syringe! Thanks for your help.

SlowDragon profile image
SlowDragonAdministrator in reply to

You can choose finger prick option or pay extra £25 with Medichecks for private blood draw, or £39 extra for private blood draw via Blue Horizon

Depends if there's a clinic near you.

All thyroid tests should be done as early as possible in morning and fasting and don't take Levo in the 24 hours prior to test, delay and take straight after. This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, GP will be unaware)

If you are taking vitamin B complex, or any supplements containing biotin, remember to stop these 3-5 days before any blood tests, as biotin can falsely affect test results



A good quality Vitamin B complex, one with folate in not folic acid. Eg Igennus Super B, or Jarrow B right or Thornes

If you have low B12, you may need sublingual B12 as well

in reply to SlowDragon

Thank you SO much. You have given me more information than I have had in the last 40 years of being underactive! Do you happen to know how biotin actually affects the test results? I have taken biotin 10,000mcgs for thinning and hair loss for several months now. These were originally part of the vitamins prescribed by the doctor and now I get them over the counter.

Angel_of_the_North profile image
Angel_of_the_North in reply to

It depends on which assay method the lab uses. Most often biotin causes TSH to appear too low and free t4 too high so you look overactive, but it can go the other way.

SlowDragon profile image
SlowDragonAdministrator in reply to

You just need to stop,any biotin supplements 3-5 days before any blood tests

You may also like...