Ideal levels

[Elsabristol]

Hi all, I had Graves disease with a large goitre in my chest so had a thyroidectomy a year ago. I have been on various doses of Levothyroxine and went from hyper to hypo. I am now on 50mg, the GP has said they would rather keep my under due to risk of osteoporosis. I am unsure of what correct range I should be looking for and want to make sure I am within this. Can anyone advise? Also what other supplements, vitamins etc. should I be taking? Thanks so much in advance Jacqui

[Lalatoot]

Morning Jacqui There is more risk of osteoporosis from being undermedicated than from having a low TSH. Once we are on levothyroxine the tsh is not of importance as our hormones are coming from the drug rather than from how much our pituitary gland is stimulating our thyroid (TSH). Tsh is not a measure of hormone levels.

To know the levels you need to have free t4 and free t3 tested (FT4 and FT3) . Ft4 is the hormone stored in your blood which the body converts to FT3 . FT3 is what the cells in your body use so it is the more important level.

You are entitled to a print out of your results from your GP. Beside your result you will see sets of figures in brackets. This is the normal range. There is a wide spread in the normal range. For example one lab gives its normal range for FT4 as 12 to 22. Where a person feels best within that normal range varies according to the individual. There is no one answer. The GP will just say bloods normal if your result lands within the range.

What is needed is for TSH, FT4 and FT3 to be tested at the same time.

Vitamin D, B12, folate and ferritin levels to be tested.

If you get these done post the results up here along with the ranges and folks will help you to interpret the results and you will learn more from there on.

[Elsabristol in reply to Lalatoot]

Thanks so much, that is very helpful. I will ask for a printout and to be tested with various other things

[marram]

Deliberately keeping you under is unnecessary. You need more than 50 mcg, he is clearly going by your TSH only, which is still suppressed by your Graves’ antibodies. Unfortunately most GPs do not even know this. You need to have your T4 levels checked, I suggest you ask for a printout of your last blood test, and put them on here, to get some idea just how low your levels are.

I am actually struggling not to scream in frustration and get angry, because he is putting you at far greater risk of a MULTITUDE of serious health problems by keeping your thyroid hormone levels far too low.

There is a formula for calculating how much thyroxine you need, it is roughly 1.3mcg to 1.5mcg daily per Kg body weight. So take your body weight in Kg and multiply by 1.5 to get how many mcg you need each day, at a minimum. In fact, most people feel better at the higher level, and after Graves‘ disease that is even more likely. Some need more. I found I needed 150 mcg with a bodyweight of 71Kg.

You will find it in this article:

ncbi.nlm.nih.gov/pubmed/233...

This article gives a low level anyway, so your GP would have NO cause for concern if you followed this. He should NOT be using the TSH as a guide for dosage, as it is artificially suppressed in Graves‘ disease.

[Elsabristol in reply to marram]

Thanks Marram, very helpful. Will hassle the GP 😃

[SlowDragon Administrator]

50mcg Levothyroxine is only a starter dose of Levothyroxine

The aim of Levothyroxine is to increase the dose slowly in 25mcg steps upwards until TSH is under 2 (many need TSH significantly under one) and most important is that FT4 in top third of range and FT3 at least half way in range

NHS guidelines on Levothyroxine including that most patients eventually need somewhere between 100mcg and 200mcg Levothyroxine.

nhs.uk/medicines/levothyrox...

Also what foods to avoid (eg recommended to avoid calcium rich foods at least four hours from taking Levo)

Guidelines on dose by weight

healthunlocked.com/thyroidu...

For full Thyroid evaluation you need TSH, FT4 and FT3 plus both TPO and TG thyroid antibodies tested. Also EXTREMELY important to test vitamin D, folate, ferritin and B12

Low vitamin levels are extremely common, especially after Graves and/or under medicated

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and fasting. (get tested before eating or drinking anything other than water to stay hydrated) This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

Last Levothyroxine dose should be 24 hours prior to test, (taking delayed dose immediately after blood draw).

Is this how you do your tests?

Bloods should be retested 6-8 weeks after any dose change

Many people find Different brands of Levothyroxine are not interchangeable Always stick to same brand of Levothyroxine. Many people react badly to Teva brand of Levothyroxine

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

thyroiduk.org.uk/tuk/testin...

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 special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

All four vitamins need to be regularly tested and frequently need supplementing to maintain optimal levels

Being under medicated and having low FT3 is a cause of osteoporosis.

So being under medicated or over medicated can cause same problems

Osteoporosis and FT3

thyroidpatients.ca/2018/07/...

Most important results are FT3 and FT4. TSH often remains low after Graves and should not be used as guide for doseage of Levothyroxine

[Elsabristol in reply to SlowDragon]

Thanks so much, very helpful. Will hassle GP. Jacqui

[SlowDragon Administrator in reply to Elsabristol]

Getting FULL thyroid and vitamin testing via GP or privately is probably next step

Come back with new post once you get results

[pennyannie]

Hello Jacqui,

Just for reference a fully functioning working thyroid would be supporting you daily with approximately 100 T4 + 10 T3.

I just think that if there has been a medical intervention and the thyroid removed through surgery or ablated and left in situ with Radioactive Iodine, both these essential hormones need to be on the patients prescription for if, and probably when, they will both be needed.

Some people can get by on Levothyroxine ( T4 ) alone, some people simply stop converting the levothyroxine into T3 at some point in time, and some people simply need both these vital hormones dosed and monitored independently to bring them into balance and to a level of well being that is acceptable to the patient, which generally sees both T3 and T4 being in the upper quadrants of their ranges.

T4 is a prohormone and the body needs to convert it into T3, which is the hormone that the body runs on. T3 is the active hormone and said to be roughly 3 - 4 times as powerful as T4.

Conversion of T4 to T3 can be compromised if vitamins and minerals are low, and ferritin, folate, B12 and vitamin D need to be optimal and not " just anywhere in the range ".

Graves is an autoimmune disease and as such, it's for life. Your thyroid was the victim of an attack by your own immune system and simply removing your thyroid removes the worst of the sometimes, life threatening symptoms.

Considering you have Graves Disease it's even more essential that you are not monitored on TSH blood test results, as we can have TSI/TRab antibodies that can sit and drive down our TSH results many, many years after the thyroidectomy or RAI ablation.

This gives the impression that we are overmedicated when, in fact, the very opposite is probably more true so you must insist on both T3 and T4 blood test monitoring.

I do realise this may cause you some lengthy discussions with your doctor, and maybe like me, it will be a waste of time, and you'll need to get these tests done privately.

The thyroid is a major gland responsible for full body synchronisation including your physical, mental, emotional, psychological and spiritual wellbeing. It is the conductor of your whole body orchestra, your inner central heating system and your metabolism.

I would think you must be very hypothyroid now, on such a low dose of Levothyroxine, and this in turn will mean you are not metabolising your food and so your core strength is slowly being lost as you become more unwell with various odd, seemingly unrelated health issues.

I've gained much help from this amazing website as well as the following books :-

Graves Disease - A Practical Guide by Elaine Moore: This lady has the disease and went through RAI in the late 1990's. She found no help or understanding within the medical profession so wrote a book to help others in the same boat. She has since dedicated her life to this disease undertaking research and setting up a very well respected website on all things Graves for all Graves sufferers. It is Stateside so medical protocol slightly different but it is well worth dipping into and there is an open forum much like here where you can freely ask questions and receive advice.

Tired Thyroid by Barbara S Lougheed : This lady is with Graves and amongst many other things debunks the over reliance placed on TSH blood tests for Graves patients. She again is in the States and believe she also now has a " blog " under the same title.

Last but by no means least is Your Thyroid and How To Keep it Healthy by Barry Durrant-Peatfield : This doctor has hypothyroidism and his book is an easy read detailing all that this amazing little gland does and what can happen when things go wrong, and we need to know all this and try and compensate accordingly.

There is a lot to take in, it's a massive learning curve, but you can get back to better health.

I'm with Graves Disease, having had RAI in 2005 and am now with Graves, thyroid eye disease and hypothyroidism. I have found no help or understanding within the NHS system when I became very unwell some 6 years ago and am now self medicating and buying my own thyroid hormone replacement.

[Elsabristol in reply to pennyannie]

Wow, thanks so much for taking the time to answer my question at some length. Very kind of you. I will let you know how I get on. All the best to you. Jacqui