Latest results

[Hookie01]

Hi,

I have just received these results. The report said I have subclinical hypothyroidism.

I had RAI nearly 3 years ago due to graves , should I be worried that my levels are like this or should I just increase my dose?

Thanks

[SeasideSusie Remembering]

Hookie01

should I just increase my dose?

How much Levo are you taking?

Most people feel best when TSH is 1 or below with FT4 and FT3 in the upper part of their ranges.

Looks like you could do with an increase.

How do you feel?

[Hookie01 in reply to SeasideSusie]

Hi, thanks for your reply.I'm currently taking 125/150 alternate days. I don't feel too bad, just tired, always yawning!

I'm guessing it's not unusual for results to be like that, one out of the markers and the other 2 in?

[SeasideSusie Remembering in reply to Hookie01]

I'm guessing it's not unusual for results to be like that, one out of the markers and the other 2 in?

No, it is unusual for someone on Levo to have such a high TSH.

If you're tired then you are not optimally medicated, you are undermedicated. TSH should at least be in range, maximum 2. Your FT4 is just 27% through it's range.

[Hookie01 in reply to SeasideSusie]

Thank you. I will increase my levo and see how I go.

Thanks again.

[pennyannie]

Hello Hookie :

Well , did you detail yor medical history to the company who ran this blood test, as since you have had RAI thyroid ablation for Graves I would have thought primary hypothyroidism the appropriate diagnosis, like I get on my doctor's report when I run a private blood test.

It is essential that you are dosed and monitored on your T3 and T4 blood test results and not a TSH : though have to say your TSH is high, whereas mine is always at 0.01, and your TSH crying out for more thyroid hormone replacement which is exactly what you need.

What medication are you currently taking?

How are you currently feeling as RAI can be slow burn with an unspecified time line for when your thyroid is completely disabled and burnt out and you rendered fully hypothyroid.

If on T4 only we generally feel at our best when our T4 is in the top quadrant of the range as this generally converts to a corresponding high level of T3 :

Your T4 is just 27% through it's range with your T3 is coming in at around 25% through so you just need more thyroid hormone medication.

T4 is a storage hormone and needs to be converted by the body into T3 the active hormone that the body runs on and is said to be about 4 times more powerful than T4 with the average person needing to utilise/ convert / find around 50 T3 daily, just to function.

No thyroid hormone relacement works well until your core stength vitamins and minerals, especially ferritin, folate, B12 and vitamin D are mantained at optimal levels, so just another area of health and well being o be considered.

A fully functioning working thyroid would be supporting you daily with trace elements of T1. T2 and calcitonin plus a measure of T3 at around 10 mcg plus a measure of T4 at around 100 mcg.

The thyroid is a major gland and responsible for full body synchronistion including our physical, mental, psychological, emotional and spiritual well being, your inner central heating system and your metabolism.

If on monotherapy with T4 only you have in effect been down regulated by some 20% of your overall well being and overtime this is bound to pull you down even further.

Some people can get by on T4 only, some people find T4 seems to stop working as well for them, at some point in time, and need to add back in a ltlle T3 to the T4 dose, some people can't tolerate T4 and need to take T3 only and some prefer to take Natural Desiccated Thyroid.

Up until around 20 odd years ago all these options were available on the NHS, but sadly now, you maybe only offered T4 - Levothyroxine, as it has become something of a post code lottery and " going private ' to the right specialist probably the fastest best option if you can afford it.

I deeply regret having RAI and became very unwell around 8 years later but found no help nor understanding within the NHS and having been refused both T3 and NDT in 2018 started self medicating and have been able to get my life back to some degree.

If you don't know of the Elaine Moore Graves Disease Foundation website it is worth dipping in, as Elaine too went through RAI and found no help with her continued ill health for Graves Disease and writes in detail about this poorly understood and badly treated autoimmune disease. and I found her first book very informative.

Your Thyroid and How To Keep It Healthy written by a doctor Barry Durrant - Peatfield who has hypothyroidism is another good book as we need to know what this amazing little gland does so we can try and compensate accordingly.

I was diagnosed Graves in 2004 and had RAI the following year, though I was well on the AT medication told I couldn't stay on it and that RAI was safer and better for me ?? ??

I now manage lingering Graves, thyroid eye disease - caused by the RAI, and hypothyroidism and self medicate taking Natural Desiccated Thyroid which contains all the same known hormones as that of the human thyroid gland.

[Hookie01 in reply to pennyannie]

Hi Pennyannie,Thank you for your detailed response.

I am on T4 only at the moment, I keep trying T3 but since taking levo or T3 I keep getting awful bloating on my right side. I have been trying to source Aristo lactose free for sometime as had a hunch it was the lactose in the meds causing it. I finally managed to get some the other day and I have to say it has made a difference already. Also my eyes have stopped being sore, so it was the mercury pharma causing the sore eyes!

So basically I need lactose free T3 which as we know it's hard to get the brand you need! That is my next battle.

I would love to try NDT but there isn't much about at the moment is there, and I can't afford armour!

Some days I regret RAI, wish I had tried harder to keep my thyroid, but if I hadn't had it I may have been in a worse state. We will never know!! I just keep battling, will never give up!

I too am suffering with what I believe is TED, only recently started. This disease totally sucks!

[pennyannie in reply to Hookie01]

Please get registered with the TED charity and be " signposted " to an specialist who has some understanding of Graves Disease.

Just remember we still have this auto immune disease but now, I feel, simply ignored as we are not considered with a life threatening illness but a life limiting health issue which no one has any real solutions for.

The Elaine Moore books and website, though Stateside, are very informative.

Thank goodness there is Thyroid UK the charity whosupport his forum and other people who have some understandng of the situation we find ourselves in.

[PurpleNails Administrator in reply to Hookie01]

The link for the TED charitable trust is

tedct.org.uk

They are very informative and you can join for information packs & newsletters. They also have a Facebook page.

[Hookie01 in reply to PurpleNails]

Thank you, I have made myself a member and found the fb group.

[Gingernut44]

Just a quick note - I believe Thybon Henning T3 is lactose free.

[Hookie01 in reply to Gingernut44]

How what I source that please? Isn't it only available in Germany?

[Gingernut44 in reply to Hookie01]

It is available with a private prescription from selective pharmacies in UK. First you would have to find a private Endo who would be happy to write you a private prescription. It can be done.

[Hookie01 in reply to Gingernut44]

Ohbok, thank you. I have got a prescription for T3 and I think my endo does private prescriptions so I will ask. Thank you.

[Thalia_sredaf]

When was your last ultrasound? Your TSH is u and your FT3 and FT4 show you are hypo. I would check for new thyroid tissue growth by ultrasound.

[Hookie01 in reply to Thalia_sredaf]

I haven't had an ultra sound since they diagnosed me with graves. Sorry, what do you mean by TSH is u?

[Thalia_sredaf in reply to Hookie01]

Your TSH is up. Sorry. It means your pituitary gland is signalling your thyroid gland to produce more T3 and T4 hormone but you had RAI and you shouldn’t have any more thyroid tissue.

[Hookie01 in reply to Thalia_sredaf]

Oh I see. Erm maybe I should have a word with my endo then!!Thank you.

[pennyannie]

Hey there again ;

Just to add - looking back at my history,

I had RAI in 2005 and throughout 2008/11 my TSH registered up in the mid teens on several occassions for a few months at a time :

I had no additional symptoms when this happened ;

I believe RAI is a slow burn and it can take months to years to fully disable the thyroid :

RAI does break the HPT axis, which is why we must be dosed and monitored on T3 and T4 blood test and I tend to think and believe that the TSH is a totally unreliable measure of anything.

I too never had any follow up after RAI and when I tried to find answers to my continued ill health, all of which I know now were symptoms of the RAI treatment I found no answers.