GP not really understanding

[Vw68]

I had RAI around 5 years ago for Graves disease which I have had since 1991, RAI was considered the best option as I had relapsed 3 times and can't take Carbimozole.

When I was controlled by propylthiouracil my TSH was kept around 0.8 and T4 around 20.

It took two years post RAI for me to feel any symptoms of hypothyroidism, and I was told I had a resistant thyroid, my TSH was around 1.3 and I asked the GP if it would be sensible to start levothyroxine as I knew I was hypo, after a few months TSH was 1.7 and GP reluctantly increased to 50mcg. I still felt hypo but when I saw GP again after another few months TSH was 1.3 and T4 20. He said I was going hyper again and reduced my Levothyroxine to 25mcgs. 2 months later my TSH is 17.1 and T4 14. Back on 50mcgs! I know it is not enough, but my GP suggests that my symptoms might not be hypo e.g. joint pain, tiredness.

I go back for another blood test in September, how can I suggest that he increase my dosage to say 75mcgs to bring my TSH down to 1 or below?

I don't want to tell him how to suck eggs, but after 30 years of this disorder, I feel that I am quite expert! Any help would be appreciated. Thanks x

[SeasideSusie Remembering]

Vw68

Difficult to interpret your results without the reference ranges. Even though TSH ranges are similar, FT4 ranges can vary greatly so we need to see the range that your lab uses and comes with your result.

I know it is not enough, but my GP suggests that my symptoms might not be hypo e.g. joint pain, tiredness.

I go back for another blood test in September, how can I suggest that he increase my dosage to say 75mcgs to bring my TSH down to 1 or below?

Eliminate other possibilities.

Joint pain can be low Vit D.

Tiredness can be, among other things, low ferritin or iron deficiency. Low B12.

Ask GP to test key nutrients - Vit D, B12, Folate, plus a full iron panel (not just ferritin).

Optimise all key nutrients as follows:

Vit D - 100-150nmol/L

B12 - top of range

Folate - at least half way through range

Ferritin - half way through range although some experts say the optimal level for thyroid function is 90-110ug/L

Serum iron - 55-70% through range

Transferrin saturation - 35-45%

Ask for full thyroid panel - TSH, FT4 plus FT3 - it's FT3 that's the most important result and the one that tells us if we are overmedicated.

[SlowDragon Administrator]

The most important is to get thyroid levels sorted

Always test thyroid levels early morning, ideally before 9am and last dose levothyroxine 24 hours before test

Looking for Ft3 at least 50-60% through range minimum, frequently Ft4 will need to be higher

All four vitamins need to be optimal

Get vitamins tested NOW and work on improving to good levels

Test privately via Medichecks or Blue horizon if GP unhelpful

Have you had coeliac blood test done

Are you on strictly gluten free diet?

Gluten free diet often helps Graves patients and well as those with Hashimoto’s

Always worth trying.

[pennyannie]

Hello Vw and welcome to the forum:

Primary hypothyroidism caused by RAI thyroid ablation is said to be more difficult to treat.

RAI is a slow burn and doctors tend to just dose and monitor on a TH reading which is not appropriate nor is using words such as ' going, or gone hyper ' - and simply shows a total lack of understanding the situation and simply reciting the computer dogma.

You can't go hyper as you have no thyroid to stimulate and even if your Graves antibodies were still raging they can't cause the havoc they once did as your thyroid gland has been fully disabled and totally burnt out in situ.

After the medical intervention of either a thyroidectomy or RAI thyroid ablation the HPT axis the ( Hypothalamus / Pituitary / Thyroid ) feedback loop on which the TSH reading relies on is broken and not complete as your Thyroid is longer there or functioning.

A fully functioning working thyroid would be supporting you on a daily basis with trace elements of T1. T2 and calcitonin + a measure of T3 at around 10 mcg + a measure of T4 at around 100 mcg and T3 is said to be around 4 x more powerful than T4 with the average person needing to convert and utilise around 50 T3 daily just to function.

Some people can get by on T4 only :

Some people find T4 doesn't work as well as it once did and need the addition of a little T3 to replace that ' lost ' when their own thyroid became disabled.

Some people can't tolerate T4 and need to take T3 - Liothyronine - only.

Whilst others feel their health restored better by taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human gland and derived from pig thyroid, dried and ground into tablets referred to as grains.

It is therefore essential that you are dosed and monitored on your T3 and T4 blood test readings and we generally feel at our best when our T4 is up in, or towards, the top quadrant of it's range as this should, in theory, convert to a decent level of T3 which is the active hormone needed by every cell within our body.

T4 is a storage hormone and needs to convert within your body into T3 and this can be compromised by non optimal levels of the core strength vitamins and minerals, especially those of ferritin, folate, B12 and vitamin D .

RAI is known to trash vitamins and minerals.

Conversion of T4 into T3 can also be compromised by any body inflammation, any physiological stress ( emotional or physical ) depression, dieting and ageing, so there's a fair bit to try and keep in check, but it's possible.

RAI can also trigger symptoms similar to those of Sjogren's Syndrome and fibromyalgia.

As to sucking eggs - I fully understand that in primary care you may have difficulty even getting the appropriate blood tests run let alone the fact that Graves is a poorly understood auto immune disease and for which there is no cure.

All that this treatment achieves is to switch you from hyperthyroid and needing hospital management to hypothyroid and discharge out into primary care where it's deemed you will be " better looked after " .

I actually purchased a second copy of Elaine Moore's first book for my doctor, so in your terms guess that was like 2 dozen eggs all at once !!

My doctor declined Elaine Moore, which was where I had started my research and learning curve, and after a couple of years of referrals to hospital for various issues and a refusal to prescribe me anything other than T4 - Levothyroxine I resorted to self medicating around 4 years ago and am much improved.

If you go into Thyroid uk - thyroiduk.org - this is the charity who support this forum and where you will find information on all things thyroid and there are details of private companies who can run the relevant blood tests for you if you come up against a brick wall.

Once with the results and ranges feel free to start a new post detailing the results and ranges and forum members can advise of your next best step back to better health.

I'm with Graves post RAI in 2005 and now manage lingering Graves, thyroid eye disease caused by the RAI and hypothyroidism.

You might like to dip into another book, if you don't already know of it :

Tired Thyroid, from Hyper to Hypo to Healing written by Barbara S Lougheed who also has Graves and went through RAI thyroid ablation, as did Elaine Moore who must be the most well respected of all the medical researchers and with a World wide following and supporter of better options for Graves Disease patients.

elaine-moore.com